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.
If you listen, the Universe or whatever higher power you believe in is sending you clues.
On the Empowered Wisdom hour podcast I listened to this morning, Molly MacCartney led us through a meditation where we visualized our journey in a literal sense, through this big, expansive field. We were tired. Cold. Hungry. But kept pushing on to the perceived end result, the goal of wherever we were trying to get to. Then we came across a little old cabin. Inside, the fire was lit and it was warm. All of these wonderful ingredients were laid out to make a delicious hot meal. And by the end of the story, you realize that it’s okay to stop and rest for the night, to replenish your body, and maybe fill your heart and soul cup, too, while you’re at it. The end result will be what it will be, and it will always be there waiting. So take the time to stop and enjoy the journey.
“Nature does not hurry, yet everything is accomplished”
– Lao Tzu
This quote comes to me quite often on the little paper piece of the tea bags that I use. Just because it’s been commercialized, doesn’t make it untrue. It is really comforting to me and a great reminder that it is okay to not accomplish everything all at once. All of my health, personal and career goals are going to evolve and work themselves out, and that won’t always happen in giant leaps. Especially with the fatigue that comes along with MS, I am no longer able to push myself as hard as I used to to get to the end of the to do list each day. I hit my wall at about 3pm and just don’t have as many high efficiency production hours a day. I have had to accept this and remind myself that making progress a little bit at a time is better than no progress at all.
This little gem of a quote is about patience, about appreciating and living in the moment. It’s about self acceptance and being kind to yourself. To me it also means you have to trust the process and enjoy it, otherwise you miss out on everything in between if you’re just focused on the end result. Not to mention the stress and anxiety you’ll acquire from fixating on some other place that you are not at yet. Let your destination be a by product of showing up everyday with some heart and intention. It’s okay. You’ll get there.
The card I drew this morning from my Mystical Shaman Oracle deck was “many paths”. Funny how that should come up now while on a global scale, many of us have been forced to put aside a lot of the distractions of our daily lives because the running around to get to the end goal isn’t possible at the moment. It has made some of us contemplate the path we are on, and what power we have over our life experience. As the card explains, “What you bring to your journey is what will determine if yours is a path of suffering, a path of wisdom, a path of bliss, or a path of loss.” Everyone has challenges in this life, and MS, for me, has brought this concept front and center.
Recognizing the beauty and lessons in the journey, and having the patience to let everything unfold in it’s due time has been one of my biggest enlightenments in the past year. Of course I have goals. But, I’ve decided to not obsess about how I get there, or what exactly the end result looks like. Ultimately, I can’t just stick my head in the sand, either, and expect progress. Surrendering to the powers that be doesn’t mean inaction. I’m just choosing to embrace each step along the way, and not worry about what doesn’t even exist yet.
I’ve read many times that getting attached to a certain outcome is a huge source of pain and suffering. Here is one way I convey this concept. I’ve had the Duolingo app on my phone for well over a year now. At first I would go through phases of practicing somewhat regularly, and then not looking at it for months. I realized that my end goal of learning to speak Spanish was actually holding me back. I would practice for a few days, feel good I learned a couple of words, and then scroll down at all of the lessons I have yet to do, and get discouraged. Speaking Spanish was hours and hours and hours away from me! I would think, “this is pointless.” At that rate, I said to myself, when I do the math it’ll take me 2 years to have a conversation with someone. But, I came to realize, if I let that go, and just do a little bit each day, that time passes anyway and all of a sudden I will be speaking Spanish. It’s the inevitable by product without all the stress on my progress each day or focusing on how far I have to go still. I’ve now been doing 5-10 minutes a day for 134 days! And gosh darn it if I can’t string a few words together to make a sentence. This process really relates to life as a whole, I think. I’ve come a long way, and I have a long way to go. All I need to do, is show up each day and trust that I am exactly where I am supposed to be.
Let’s face it, guys. There are a lot of scary things out there. Deadly viruses, murderers, and the like. The fear of failure, that what I am doing is the wrong choice. The reality is, a lot of what I am experimenting with for my health or with other life endeavors might not work out. And that is quite alright, because I can tell you that in all my 33 years of wisdom, that the only guaranteed way for it to not work out, is to not try.
So, what am I looking into next? Breathing. Turns out we are all doing it wrong. Google it, there are a ton of reasons, including immune support, as to why we should slow down, get back to the basics, and make sure we’re doing it properly. We don’t become better humans over night, so I’ll be adding some daily breathing exercises into my repertoire. Can’t be too hard to mess up, right? And it’s something I have to do anyway. Wish me luck 😉
It has been evolving over time. This idea of creating my sacred space. Step one was deciding it was important to me. Step two: what does that even mean to me? And thus, what does that look like?
Now that I have some thoughts brought to life, as I picture my space, I would describe it as warm. Inviting. The sun streams through the blinds in the morning and my plants are alive and vibrant. Green and growth are homey to me. I can see the moon peaking over the mountains at night. On a full moon, the whole room glows with magical moonlight. My candles, my small collection of rocks and crystals, as well as a small Buddha token adorn the top of an ottoman I’ve repurposed as an alter of sorts and it has has just become my spot. I do yoga there. I journal. I pick from a deck of oracle cards once in a while when I’m looking for a little inspiration or guidance. My dogs will often join me there. When I think about this place, I am happy.
Your spot doesn’t have to be much. Mine literally started as the only carpeted place in my house that I could physically fit my yoga mat. So the guest bedroom is where my sacred space was born. I pulled an old tapestry out of a box in the attic and tacked that to the wall. I liked the colors. As simple as that and no need to worry about interior design esthics. I started doing just 10 minutes a morning of yoga there and realized the sun is absolutely glorious in the morning. Maybe some plants would like that room. So it became their home, too.
People talk about alters in their “sacred spaces” so in thinking on what I could use for that I remembered that I had an extra ottoman that we weren’t using. Another trip to the attic to haul down the same exact ottoman we have in our living room, to put in the nook by the closet. (Why I decided to buy two of the exact same pieces of furniture is beyond me, but in hindsight they were on clearance at Target, so I needed them both???) Anyhow, the fit was perfect. I had a candle gifted to me by a friend that was poured on a full moon. That went on top, along with a gratitudes journal and a pen from a sushi place back east. I have fond memories of that dinner and time with old friends.
I’ve added pieces over time. A tool box of sorts for whatever I may need in the moment. If I feel like I need to draw or color in my journal, some colored pencils are right there. A small bluetooth speaker after my phone speakers decided to blow out so I can still follow along to guided yoga or meditation. And of course some trusty mat cleaner and it’s associated sponge.
There are many, many books and internet resources if you are looking for inspiration on what a sacred space looks like. But basically, it can look like whatever you want it to look like, and it doesn’t have to come together over night. It will evolve as your inner and outer journey calls for what it needs in that space. A month ago, mine looked like this:
It was mostly dog bodies and beige carpet. I still share that space with my husband’s percussion instruments. And there is a little more color on the walls now. I’ve made it mine.
It was really hard for me to decide in the beginning that creating this space was worthy of prioritization of what I spend my money on. I have always felt guilty about buying the “good” loose leaf tea, or the essential oils that I don’t “need”. Framing and hanging art. Buying the more expensive (and safer) soy candles. Candles in general. It all seemed like unnecessary extras. Buts it’s not. It brings me joy gosh darn it and I finally decided if that peace and happiness that I find there will reverberate throughout my day because of a few material things then I’m doing it. It’s worth skipping a drink at the bar (or at that next Zoom meet up) to look at a watercolor I did on the wall and remember the warm sunny day as I sat there and painted in a grape orchard. And I will have that memory and associated feelings whether I wake up with stiff joints and numb legs or not. Art brings me joy. Plants bring me joy. As do books and tea pots and trinkets or jewelry from my travels. Who in the heck ever told me these things are less important than my well being? Because they really do contribute to a better mood. Cultivate that! And maybe skip the extra double shot venti at Starbucks next time, Aimee.
In a time when we are physically asked to slow down and spend more time at home, I am glad my sacred space has taken root and helped me get excited about my morning yoga and regular meditation routine. These two things alone are what I completely attribute my sanity to through this global crisis. These days, or any days for that matter, we all deserve our own little corner of the world where we feel safe. Just a little place where it is safe to be. Safe to explore your feelings and a mind body connection. To heal. To be joyous. To physically and mentally to explore the inner workings of our mind and soul and come out better for it on the other side of the time spent there. Do what it takes to get you excited to be in that place. You are worth the work, the time and the money to create that space and be there.
All the love from my little slice of life to yours,
My friends often ask how I am doing. My family likes to say, “how is the MS?” This post is to let you know that I am doing well. My body has sent me some not so subtle hints to slow down in the past few months, and I am finding many ways to enjoy this collective pause button that the universe has hit on the entire planet. I may be physically distanced from you all, but I feel closer to you now more than ever.
Are you wishing you had the insight to purchase a lot of Zoom stocks before all this went down? Yeah, me too. It has been an incredibly helpful platform to connect with coworkers and loved ones, alike. I was even able to “meet” with my Neurologist on Thursday.
We obviously had a chat about MS and COVID-19. It was reassuring to hear that I am not crazy for wearing my N95 mask to the grocery store, even if I am the only one. I am more likely to get sick because of my compromised immune system. Getting sick is an exacerbation on my body that can cause an MS flare up. And with a compromised immune system, it is probably not a good idea in general.
On a positive note, he said if it helps me sleep at night, there is some interesting research coming out of China and Italy regarding MS and COVID. It is far too early to tell and much more research needs to be done, but for some reason, it seems like MS patients on DMTs (disease modifying therapies), who therefore have a weakened immune system may fare up to 5x better than those with a fully functioning immune system. My doctor thinks this is probably due to the whole cytokine storm effect that COVID has on your body. A fun little video on that and Coronavirus as a whole right here. Per very preliminary results and records, only one person with MS has died over there, and they were untreated with DMTs. My takeaway – and don’t quote me on this – but I am thinking that not having an immune system that can attack with all it’s “A” game might be a good thing in this case. It of course doesn’t explain why older people who naturally have weaker immune systems are dying at higher rates. So, who knows…
To bring you up to speed, I had my first half dose of Ocrevus in mid-February. The second half dose was late February. About two months in and I feel great. While my B cell count was immediately reduced after even that first half dose, it can still take up to 6 or 12 months for all of the old cells that still “remember” to attack my myelin sheath around my central nervous system to clear out. It’s too early to tell what kind of lasting effect this medication will have on my body, so it is too soon for another MRI. Provided things with Coronavirus clear up a bit by July, I will do one then and have another follow up with the doctor. In the meantime, I have to do some follow up blood work to make sure all the levels of all the things in there still look normal. (That piece is magic and mysterious to me. I’ll leave the blood analysis to the doctors.)
My next maintenance dose, as the doc calls it, is in August. And after that, I only need to be attached to an IV all day twice a year (every 6 months.) That is, unless I get pregnant. For those of you who are wondering when little Straws will be joining the nest, know that yes, we would like to have kids, and are finally ready, but don’t want to force it. There are many layers that have gone into our decision to wait just a bit longer (yes, that kills me, too), but right now I am focusing on getting my body on board.
Funny that I never thought that everything wouldn’t immediately adjust to not taking birth control anymore. Almost a year ago I took my last little blue pill, and it was 5 months before I got my period. Another 4 for it to normalize and for me to start ovulating. But in hindsight, duh. I had a tiny pill full of hormones pulling the strings for 15 years. It makes sense that my body had to say, “wait, I have to do this on my own now? Ok, ok, give me a minute.”
In the midst of all that, a turn of events led me to a new neurologist and I ended up on a new medication. There aren’t really any studies on how it effects pregnancy. Plus, Mom (me) has to be in good enough shape to be able to handle pregnancy and the after effects it may have on my MS. Or, more like how my MS will react to the pregnancy. I’m also working through some food sensitivities and a candida cleanse with my Naturopath doctor – but that is a whole different side bar. The long and the short of it is, after discussing with my doctors, it would be best to wait and get some things straightened out first. Then, 2 months after my next dose of Ocrevus this summer, we shall resume operation make a baby in the fall. Maybe. No pressure. Who knows, we might not be able to have biological kids and so we’ll cross all those bridges when we get there. For now, it’s me time.
I continue to do daily yoga and meditation, eat well, and am getting lots of walks in with the dogs. I commit myself to checking a few things off my to do list a day and try to constantly scan for gratitude. Some days I am more tired than others. Some days I have some tingling, buzzing sensations happening. It’s not pleasant, but it’s certainly not as bad as the intense nerve pain I was having in December and February. I do my best to connect with the joy that radiates from within and not base my happiness on external situations in my life. Basically, it’s not always easy, but my baseline is happy and hopeful.
Oh yeah, and happy Easter 🙂 Whether it is the power of Christ that compels you on this glorious day or you throw some respect toward the old pagan traditions of honoring the birth of Spring and mother moon, all the power to you. Take some time today to think about what Easter means to you, and enjoy. Even if it’s just all about that ham, I hope you have a wonderful day.
For the most part, MS hasn’t really been on my mind. I see this as a global problem that I, nor anyone else can escape from. The enormity of it has been quite consuming so far. But yes, there are some nights I wake up panicking because on an individual level I am immune compromised, more prone to upper respiratory infection and would have a harder time fighting it off. I push that fear aside and move on. More appropriately, though, I should be recognizing it. Feeling the fear, dealing with it and then moving on as so beautifully put in the article below.
I have to say, this one is so on point for me! Now and other times, I do that all the time where I feel like I question my feelings. Sometimes I’m scared they’ll overwhelm me if I let them in. I need to let go of that resistance to feelings. I’ve been saying for a while now to feel the feelings for a prescribed amount of time and then move on, and I like how he says this:
I often come back to the book the Power of Now. About how the acceptance of the now, doesn’t mean inaction. It means letting go of resistance to be able to make decisions from a place of clarity and for the highest good. I can’t emphasize that enough.
The Book of Joy has taught me many things, but something that particularly resonated with me was that helping others is one of the best ways to defeat depression and feel a sense of purpose. It’s why I thoroughly enjoy being part of Rotary so much and encourage service to others if you are feeling helpless, sad, a loss of hope. Service can mean a lot of things and can be as simple as a phone call these days. Believe me, there are plenty of people who could use some help right now and always, and it doesn’t take much to let them know you care. That can go a long way.
DAILY Yoga has been immensely powerful. It makes my feel better body and mind and spirit. Even 10 minutes a morning makes a huge difference on my outlook for the day. A lot of studios, like my local favorites Meta and Bhava are offering online classes for free and you can find a ton of classes on YouTube. I have tried a few teachers on YouTube and have landed on a favorite, Yoga with Kassandra who just started a free month long morning yoga movement. If you need some accountability, doing one of these challenges is a great way to get started. And they are 10 minutes, not a huge commitment. The ROI is phenomenal.
As my morning yoga practice has grown, so hasn’t the time I’ve been carving out for affirmations, gratitudes and meditation. I’m about to embark on a journey to finding and cultivating more abundance through a meditation group. https://chopracentermeditation.com/ Hope is quite powerful and goes much deeper than optimism as book of joy also talks about. Most people could benefit from a little more of these things. If you are looking for other ways to explore meditation, the headspace app is a nice, general, anti-anxiety fix. And the insight timer app has just about any theme or length of time you cold want. I love that I can sit down and say, “hey, I’ve got 5 minutes and I need to slow down and recenter.” Or, “That was a long day, I need to settle my brain down and could use some help relaxing and getting to sleep.”
Follow your inner guidance. I like to be inspired by oracle cards. Just about daily I will draw a card. Sometimes I do more detailed spreads if I’m trying to figure out what to release or attract. They often coincide with what the moon is up to at the time. I realize this might be a bit much for some people, but it’s a framework I enjoy. I don’t look to the cards to answer my “yes” or “no” questions, I put something out there and whatever card I draw makes me do a little soul searching. Ultimately I am making the decisions and it’s fun to see what pops up. It has been helping me trust myself, my intuition and not constantly look for re-assurances before doing everything.
As I often speak about, a connection to nature is quite comforting. It’s vital really. Get outside.
I have found renewed strength in my connections with others during all this. My husband and I have enjoyed the time at home together, the hikes and dog walks that have slowed us down and have led us to some really deep and meaningful conversations. I value the virtual meetings and happy hours. Whether we are talking about the impacts this virus has had on our lives, or just distracting ourselves from it for a moment. I’ve discovered a deeper connection to others and they’ve shared articles or books or activities that are helping them. I feel needed and purposeful when I pass on the value of what I’m learning.
Or, not talking about it sometimes is what I need. Taking a break – no news, no Facebook, no computer time one day a week. I’m still plugged in for work of course, I’ll scan my emails for time sensitive ones and will answer phone calls, but I’m not spending hours at my computer where every email, every article or facebook post, every interaction with another person is a conversation about coronavirus. That one day, I don’t want to call anyone either. I am acknowledging my situation, I am in no way denying it. I am just choosing to not spend time on it constantly. Brené brown has a fantastic podcast on this called comparative suffering and it’s only about 20 minutes. Perfect to pop on while you’re taking a shower or folding some laundry. That way I’m feeling more refreshed to get back at it for the rest of the week.
My dogs are a constant – they don’t care about viruses. They just want walks and hugs and love. And dinner – definitely don’t forget dinner 😉
Blogging – it’s cathartic for me. I enjoy the connections I am making and hope that it is a service to others. But maybe you enjoy painting or just personal journaling. Find time and space for creation and self expression.
One thing I do want to make more space for is creation. Get out those beads and make a bracelet or work on some watercolor paintings. It’s a huge part of alignment/balance and self care. About connecting with your core being and not just what is happening in my body on a physical plane (like my MS) or externally (global pandemics and all).
It’s hard to be healthy mentally if your body is struggling. Do the basics. Wash your hands, eat well, and get plenty of sleep. And always, always, drink enough water.
On the flip side. Self care means mental health, too. Not only is your reality a projection of your mind, but the body will for sure manifest stress and other intangible thoughts and feelings into physical illnesses.
Despite hitting pause on everything, there are external pressures on us right now to pay the bills, our rent and get food on the table. Know that there are local and federal government support systems in place or in the works in the form of small business loans, leniency on evictions, feeding communities, and lenders doing loan forgiveness programs. There are also emotional support systems like Building Hope here in Summit County that I bet your community offers as well. You just have to look for it 💛
And so many times, it comes back to control the controllable. You have more power than you think.
Lastly, I have you all to thank for all this advice. My friends, family and coworkers have all shared much of this with me and I only hope to pass it along so that it may also help someone else. I feel like a lot of this is relevant no matter who you are. And, if you are looking for more during this outbreak on MS related issues, check out the Rocky Mountain MS Center’s COVID-19 resource page, including a really helpful webinar with a Q&A session that just might answer some of your questions.
There is so, so much more I am probably forgetting and I welcome you to share what has been helping you cope. With coronavirus, or life in general.
Til next time, loves. May you be healthy and well – mind, body, and spirit.
I have absolutely no concept of time anymore! You with me on that? This global pandemic has been at our doorsteps for some time now. It feels like it’s been a year, but it’s only been like a week. Wait, I looked at the calendar and the first case in Colorado was about a month ago. Hold on, what day is it, anyhow?! Through all of it, a new normal is setting in. At the same exact time I feel like I am constantly making decisions that may have huge impacts or are life or death. It’s exhausting, but I’m doing my best to go with the flow.
This constant in flux motion has had it’s stresses at times. Ultimately, though, I am kind of happy to be holed up at home. I am embracing hibernation this winter and welcome the mandated stay at home orders. At least now I have an excuse. Step one: Be okay with being at home all the time. It isn’t a prison sentence. It doesn’t equate to inactivity or boredom. The alone time has been nice. I don’t know about you, but I’ve had plenty of work, taxes and personal tasks to keep me busy that I have yet to sit down and read a book all day or work on my jigsaw puzzle.
I’ve been taking other steps to reduce anxiety. I am trying to limit my online time lately. I am staying informed but spending less time on Facebook in order to limit my exposure to political or coronavirus posts that raise my blood pressure.
As with my career in real estate, the ability to adapt in this time of great upheaval is crucial. Relating things back to nature is a language I appreciate and understand, so I’ve resonated with a few things that the universe has sent my way lately. And they relate to concept of fluidity in the form of water. I started exploring this idea with a water element yoga class – free online through Yoga with Kassandra.
A chat about the elements and a guided meditation the other night through my acupuncturist, Lynne Drakos of A Balanced Crane Acupuncture, was enormously helpful in settling things down and helping me feel more grounded during all of this uncertainty. You know what will always be here no matter what? Rocks and sticks and air and dirt. Despite current climate change discussions, this earth has been through a lot and will most likely still be here, in some form or another, long after anyone reading this post. It gives me comfort to relate things back to nature, but of course, feel free to use whatever format makes the most sense to you.
I am sure you are getting inundated as I am with emails from various retailers, banks, or your local library about all of the virtual museum tours you can take, art and home projects to do, etc etc. My advice is to take one bite at a time. For me it is so overwhelming to have all of these things to do floating around out there. Even more stressful that everyone keeps saying we have all this extra time. I don’t know man, I definitely feel like the days are flying by and I’m not accomplishing everything I want to get done. So, I am working on picking one theme a day, or a week, or whatever amount of prescribed time feels appropriate. I am making it all more manageable, and just like nature, trust that it will all happen in time. Time itself is a human-made concept. Let go of that. Sometimes I have to remind myself to be patient. To just be.
Lately, my intentions have been centered around adaptability. I look to nature for inspiration – I look for water flowing in the streams when I walk the dogs, I am conscious of how much I am drinking (stay hydrated y’all! It’s important for you health on so many levels), and pay attention to it’s lessons of stillness or fluidity. It’s ability to calm or exert incredible force.
In a practical sense, I have things like Asana to keep long term reminders and work projects organized. On a daily basis, my reminders app on my phone is how I stay sane. I put personal and work tasks in there and schedule them for specific days. It helps me know that I am on track, not missing deadlines, and gives me the ability to spread out certain duties. You don’t have to do it all in one day. It’s always changing and becomes a moving target, so pin down what you need to do and when. You’ll feel better, I promise.
On a larger scale, fluidity has helped me a tremendous amount when it comes to managing my MS. Yes, there are all of the unknowns surrounding my physical capabilities, emotional repercussions, or day to day symptoms.
And, tied into all of that has been my exploration of food and my journey to finding a diet that works best for me. It unfortunately is not as simple as “eat this and you’re cured.” I’ve made a lot of changes over the past few years that have resulted in me feeling much, much better. But I still have a lot of work to do.
I was just reading about the importance of your gut bacteria, or microbiome/gut flora in the most recent issue of Momentum put out by the National MS Society, and the incredible impact that can have on your entire body – your immune system specifically. It is not just about digestion. They still have a lot of studies to do, but when it comes to cancer treatment they have found that different microbiomes affect responses to certain treatments.
It is incredibly validating to read about this because my diet is something I’ve been tweaking for a long time now. The whole goal being that my gut flora is in balance and that I am reducing inflammation enough so that my body can function more properly, or allow my medication to work to the best of it’s ability. As the article points out, “we harbor as many bacteria cells in and on our body as our total number of human cells; that is, we are only about 50% human!” phD and professor at the Weill Institute for Neuroscience at the University of California San Francisco points out.
My Naturopath doctor also told me at one point that we have something like 8 lbs of bacteria in our gut. That is crazy! How can it not have a huge impact on how everything functions? So, in an effort to help my body heal and work better, I decided to delve a step further into what I eat. The various protocols and diets I have looked in to are very convincing and seem to have incredible results. But, we all have unique biochemistry, so what, exactly, will work best for me?
In an effort to narrow that down a little better, I took a blood test that measured antibodies to certain foods and my levels of candida yeast. What the test basically does is tells you what foods your body has a reaction to. Some surprising results came back to say the least. One being that I have an extremely high sensitivity to chestnuts. I don’t think I’ve ever seen a chestnut in person, let alone have eaten one, but hey. I that case, avoiding them should be easy.
Some good news – all fruits and veggies are a go. But, that means loosening up my paleo principals and Wahl’s protocol for a little while. Hello peanuts and peas. On the down side, I was thinking that if I were to eat some dairy, that goat would be better since a lot of people with lactose intolerance can do goat products. The proteins are smaller and therefore more easily digested by some people. Not me apparently. Goat cheese is off the table according to my results, with cow milk not being ideal, and other dairy items like eggs to be eaten more sparingly.
So I can still eat some eggs, but need to alternate my breakfast choices a bit. Try a little oatmeal once in a while and see how that goes. Looking forward to adding some breakfast-ey quinoa bowls to the mix. It is a concept that Wahl’s protocol talks a lot about as well. Variety is the spice of life as they say. You need to incorporate multiple vitamins and compounds on a cellular level, and also shouldn’t be over doing it on items that your body needs a break from once in a while.
I’ve been Mediterranean diet inspired but realized that relying on fish as a protein source can be detrimental due to the high levels of mercury in natural caught fish. Paleo/Wahl’s gave me a great framework and had me feeling awesome. Heck, I’ve gone Whole 30 and eliminated just about everything. Adaptability! Fluidity! The journey isn’t over yet. More recently, I am honing in on what my body seems to have negative responses to. The idea being that avoiding food allergies and sensitivities will minimize inflammatory reactions and strengthen my immune system so that recovery can take place more rapidly. In support, I try to do activities like immune boosting yoga.
Instead of a blanket approach to what has worked for a lot of people, I want to find what works for me. The other piece of my lab work to come back a little high was my candida albicans. Put simply, my gut yeast is a bit high. So, I’m starving it out by avoiding sugar. I’m crowding it out by taking probiotics. I’m sending it a hint it’s not wanted by creating an acidic environment which it does not like. A little apple cider vinegar in warm water before meals does the trick. And, I’m avoiding (now) known food allergens like cane sugar, dairy and gluten to reduce immune response and inflammation. All this to restore a healthy balance to all of that microbiome. Gut health is extremely important.
We’ll see how it goes! Thank you for sticking my side as I flow through life and learn along the way. I welcome your feedback if you have tried alternative or traditional routes to finding balance or have advice on how to adapt physically and mentally to your situation. Global pandemic or not.
This post is about Coronavirus. (Sorry, not sorry.) But not entirely, so stick with me. At this point I am kind of sick of hearing about it. But mostly I am so very sick of explaining to people that just because they have a 98% chance of surviving Coronavirus doesn’t mean that I do. Or that my grandmother does. And that just because YOU avoid death, doesn’t mean that you aren’t spreading it around to the part of the population that does need to be concerned.
There is of course no reason to freak out. As I’ve spoken about before, the unknown can be quite scary and all consuming. My guess is, the more we find out about this thing, the more toilet paper will be on the shelves again. It of course may take some time to work through all of it, so in the meantime, be patient. Stay safe. Shave your head in case the virus like to hide in hair…Just kidding. Try washing your hands, instead. Something we should all do more of anyhow.
I tend to lean toward laid back, but of course was immediately on alert due to the timing of it all. As it so happens I took my first two doses of an immune compromising medication that stays in my system for 6 months juuuuust before the outbreak became daily news. I have to find humor in that. If I thought I was nervous about taking Ocrevus before…geez, guys. You’re not helping.
I’ll admit. I am worried at times. One of the side effects of Ocrevus is being more prone to upper respiratory infections. Cue the release of a global viral infection that attacks the lungs. Cool. I was a little worried about getting the flu before. Why not add a more severe version to the mix floating around out there. But hey, I haven’t thought about PML in days. Mostly though, the novelty has worn off a little for me, and I am coping by being as knowledgeable as possible and doing my best to not catch or spread anything harmful to others – be it viral or any other form of misinformation.
For me that consists of a lot of hand washing and thinking twice before touching my face. It’s easy. I just pretend I’m on a surf trip in Mexico. The bigger picture of daily life is a little harder. I am not holing up at home completely and self quarantining, but I am conscious of the fact that I need to be more careful and consider what going to the grocery store or large gatherings might put me at risk of exposure to. I’m working from home as much as possible, and If I do go out, I am of course steering clear of people that are coughing or look sick and wiping down the ol’ grocery cart with a few Purell wipes before cruising around with that thing among a group of people that either traveled here or have been exposed to said travelers at work and doing everything else they do in a resort/destination community. At this point it sounds like the risk of exposure is pretty low unless you’ve been out of the country, but as more cases are identified, I’ll be keeping an eye on that and assess how I feel down the road. PS – While you’re getting crazy with all of those disinfection wipes, don’t forget to take a pass over your constant companion once in a while – your phone.
What I find even more terrifying is how quickly people react to everything on the internet. And with such vigor. My goodness, do people get worked up. We are getting a little inflammatory and negative with each other, if you can’t tell, so I am definitely trying to be conscious about getting information from non-biased, accurate sources. I am mindful that statistics can be bent to fit whatever case in point any given person is trying to make. And keep in mind most of what you see on Facebook has an agenda, so maybe do a little fact checking before commenting on or sharing something. There is an immense amount of information out there, the quantity is staggering. Not all of it is quality, and germs aren’t the only thing going viral these days.
I’ve also found that panic shoppers are driven partly by a need to have some level of control. “I can avoid illness with copious amounts of hand sanitizer,” for example. How much hand sanitizer you purchase (until it runs out at the store), is generally within your scope of control. Well, as someone with MS, I can tell you it is not always an easy fix like that. But, I can relate to the need for a little sense of control where you can get it.
So, my post today is really more about that. What can you control in your life when so much of your day is adapting to symptoms or situations you cannot control. One thing that took me years to find out, and was very promising for me, was the discovery of neurological reserve.
Up until that point, I was under the impression that once you have a lesion – once you have that scarring in your brain, it is there baby, and there is nothing you can do about it. Permanent damage. Yes, that is of course a concern with MS, however, I found a lot of hope in the fact that neurological reserve is there to help your brain cope and move around the damaged areas. The human brain is pretty incredible, folks! Believe it.
I didn’t know it, but for a few years that was already my mission. My passion toward feeling better was already heavily tilted toward things like my diet or exercise choices, and to hear from an MS specialist that neurological reserve is actually possible, that my body could adapt and that my symptoms could get better was extremely validating.
Regardless of whether you are dealing with an autoimmune disease or another chronic condition, we are all human and we are all getting older, so starting now with some ‘good for your brain’ habits isn’t a bad idea. Check out this rundown on brain preservation https://www.msmindshift.com/brain-preservation/ and maybe consider following Can Do Multiple Sclerosis for additional information on a variety of topics that effect someone with MS, in all it’s varying degrees. There is so much information out there. Some of it accurate, some not. Some pertains to someone you can’t relate to because their experience with MS has been quite different. Along my journey, I have found that Can Do MS has been a great resource over the years when I have questions or want to listen in to a webinar on a topic I am curious about.
I also cannot recommend the Rocky Mountain MS Center enough for their realistic approach and valuable advice. It is definitely the “real people” connection I have been looking for for a while. Kinda like how some people are handling the Coronavirus, they have a “keep calm and carry on” approach. They aren’t laying on the fear tactics, but they also understand the seriousness of the situation and the colossal impact it may have on your life. I am super grateful to have found them to help me through it.
On a less serious note, here is your Coronavirus humor for the day brought to you by Stephen King because sometimes when it gets scary you need to have a good laugh about it…Stay safe out there, folks. And remember to think with your heart a little more, if you can. When things get a little crazy in life, I always feel better when I can clear the noise and confusion and connect with my core, my heart center. It’s never wrong.
Trees remind us to grow tall, be strong. Yet they are flexible as wind blows through their branches. With solid roots you can weather any storm.
Tied into last week’s post about managing my stress, this week’s extension of that is how hard, I am realizing, it is to put myself first. This journey into what makes “me,” “me” and all of the associated feelings and insights have been really exciting. It may be cold and snowy outside, but lately I feel like this little flower in the photo above. Winter feels forever long, the sun finally comes out and I’m bursting through to shine as bright as possible. Does this process look perfect? No. I’ll always have a few little petals to work on getting upright.
I love that photo from my little garden. That sunflower went through a lot to get to that point. From seed, it had to survive a dry arid climate, the ravenous chipmunks as a baby sprout, push up and get it’s growing done with all sorts of enthusiasm before the short window of the summer is over at 9,000 feet. It brings up lots of feelings for me of perseverance and what it means to grow. In addition to notes about how I’m feeling on a daily basis, I keep a photo journal of sorts and like to pull ones that speak to me for each post. I’ve taken all the photos you see on this blog, all on my iphone, and usually with a couple of dogs rearing to get moving again. So apologies if they are not perfect. Neither am I.
So this whole notion of “self care” and “putting myself first” is actually a new concept to me. Just like “stress” management comes up a lot, I’ve of course heard “self care is important” countless times. It now actually means something to me. In thinking about it, my insecurities and just being what I consider a fairly nice person have probably fed into that. Deep down on some level it never occurred to me to put myself first because I didn’t think I was worthy of it. Don’t worry, I’ve come around to the idea on a conscious level that I am, in fact, worthy of lots of things. One of the wonderful things about getting older is you start to figure out who you really are and start to deal with all of those scars, wounds, and “whys” that you have been accumulating since childhood. Fun stuff. It really is, though, because I am actually starting to figure out what I like, how to get it, and how to not feel bad about doing it.
Less of who I am and my value as a human is constructed entirely by what other people think of me. Which leads to why the “people pleaser” in me never wanted to put myself first. There is no time for that when you’re busy making others happy. It doesn’t even cross your mind. Being nice and bending to what others need has direct positive results in a lot of ways. More friends, more success at home or at work. It makes sense that this positive reinforcement would not force a different action. Add MS as a catalyst, and you’ll get some change.
In December of 2019, and I will never forget it, someone told me, “you don’t have to be everything to everyone else.” Holy fucking shit. Thank you Molly, the spiritual life coach I met with in Florida. I never realized I was doing that! PS – this lady is amazing, by the way. Even “Sage” (the nickname I was given that sums up my more hippy traits) was a little skeptical about going into a meeting with her. But my mother in law and her friend highly recommended her, and it intrigued me, so I went.
It was INCREDIBLE what she was able to intuit and how much she has had a constructive impact on my journey. All in an hour of our time! I am super grateful for her and will most definitely be seeking her guidance again in the future. Curious about what she could do for you? Check her out here: https://www.mollymaccartney.com/. I do not go to church or a therapist. But, I do believe that some sort of spirituality is just as important as eating, breathing and sleeping. Whatever that looks like to you. And life is messy. Even the good stuff. There is so much to be learned from speaking with someone who can untangle it all and reflect it back to you in a way that can help you make the best decisions along the way.
Anyhow, Molly blew my mind. In a good way. I fully believe that putting other people first is why I am good at my job. I am now working on how to still value their needs and concerns, while also establishing healthy boundaries so that I am not sacrificed in the process. There is no reason to believe that the only way to take care of others is by giving up pieces of myself.
Making time and space for myself on multiple levels is one thing. Another layer to that is doing so without feeling guilty about it. Especially in real estate there is always a little voice in your head telling you no matter what you are doing that you should be working. Letting that go has been a challenge. Setting time limits on “me time” and then committing to being fully present for myself has helped. My phone and my emails will be there when I get back. I can’t do everything all at the same time, so when I need to re-calibrate, I need to actually do it and not be thinking about the keys I need to pick up and mail to my client while pretzeling myself into pigeon pose. When it’s time to go into work mode, it’s time to get some things done and stop dreaming about getting into my pajamas when I get home. It is useless to be in that in between phase all the time, never fully present in what you are actually doing. I can genuinely care about others, and actually take care of them better if I’m starting by taking care of the base of the pyramid first, which is my health in body, mind, and spirit. I’m no good to anyone exhausted physically or emotionally.
Flare ups are quite obvious indicators I need to slow down or say “no” to a lot of activities I would normally partake in. They are physical reminders to take care of myself better. I always thought I was doing that, but I’m on a whole new level of putting myself FIRST (not just added to the mix), and also not feeling negative feelings surrounding all that. It is easy to slow down when you’re feeling bad. Your body makes you stop, whether that manifests itself as a cold or a fiery pain in your leg. It’s easier to say “no” to a day on the hill snowboarding if you’re coughing and sneezing or your legs are weaker than normal and not cooperating. But as I come out of a low period mentally and physically over the past couple of months working my way through flare ups and the effects of the steroids, plus Ocrevus infusions, it’ll be hard to keep up that prioritization of myself. I am coming into a phase where I am feeling much better and I’ll need to remember to try and PREVENT the flare ups, not just react to them. My yoga, art, and downtime with the dogs need to be sources of joy, not stress because I’m not doing something else, and need to happen before I can think about the trillion other things that need to get checked off my to do lists of day to day life.
It’s also good for me to get out and see or communicate with my friends and support system. I can’t emphasize enough how important it is to feel connected to “my tribe.” My hockey community, my yogis out there, my biological family far away and my chosen families here in Summit County where a lot of us have landed as implants. As always, it comes back to balance. I just need to focus on the “me” piece of the pie a little more, because really, without the “me” piece, there is no dang pie at all.
I have a chronic disease that dictates what my body, the physical vessel that holds “me” in, is able to do. That can be quite draining on me physically and mentally. I also have a soul, just like everyone else, that is a cup that needs filling. It is all too clear to me now that my buckets drain a little faster than they used to without MS, and that I have to pay attention to them more to fill them back up. I am getting used to that. Embracing it, even. Today self care and gratitude are calling to me. I am listening and I recognize their vital importance to building and maintaining a solid foundation for my best life.
If you have been following my blog, you may remember that I had a flare up in late December that put me on a three day course of Solumedrol steroids to reduce inflammation and calm the searing nerve pain in my left leg. These drugs work by overriding my adrenal gland’s functions to produce certain anti-inflammatory hormones that also reduce activity of the immune system. The introduction of steroids into my (or anyone’s) system requires you to then taper down your consumption of the steroids so that your adrenal gland can catch up and start producing these hormones in smaller amounts naturally again. Otherwise, you go into withdrawals which can include extreme fatigue, headaches, weakness, dizziness etc. I must say that I feel these effects even when following the prescribed tapered doses.
It took me about a month to orally taper down from steroids (thank goodness the IV infusions are over), and I thought I could finally get my sleep schedule back on track, let my hormones get back to regulating themselves, let go of the low level anxiety and exhaustion that comes with the ‘roids. Maybe my husband would stop calling me “Aimee hulk” (he may be joking, but in his defense, I’m definitely not as pleasant to be around on the steroids.)
Then a couple weeks later I went out for a nice Valentine’s Day happy hour with my husband. One cocktail and and one glass of wine later and my body was immediately all a-buzz. The nerve pain was back. It wasn’t going away. Reluctantly, I called my Neurologist and since the steroids have been successful in the past at working to stop the pain, he prescribed them again. According to him, the Ocrevus usually takes about 2 months to start protecting me, so it makes sense that I would still need some assistance from steroids in the meantime.
It is now late February and I just finished ANOTHER three day infusion of Solumedrol, which means getting stuck with needles daily and spending hours hooked up to an IV while the drugs drip on into my system. Within 24 hours there is immediate relief of the most intense pain. Are all my symptoms and tingles gone? No, but the trade off for how my body adversely reacts to steroids is worth the relief from the constant pain and weakness I feel when neuropathy kicks in. I need to keep reminding myself of that the past couple of days while my mood and body recovers from the intense doses of steroids yet again.
Getting through these rounds of ‘roids poses it’s challenges, for sure. They certainly don’t contribute toward a sunny disposition on life or my ability to skate as well as I would like to while playing hockey, but I’m grateful in many ways for the lessons I’m learning about letting go. Yes, the unknowns of this disease or life in general are very hard. But what if it’s okay to be comfortable in the unknown?? A friend shared an email with me today on this subject matter. This guy has some pretty awesome things to say about letting go and about life in general. I look forward to following what Mark Manson has to say. He has a no BS, yet profound and heartfelt way about getting his points across. So far, I think he’s spot on.
In conjunction with that, I had some pretty profound realizations myself sitting in traffic the other day. Per the recommendation of a friend who was also diagnosed relatively recently, I took the MS101 class down in Denver at the Rocky Mountain MS Center. I consider myself pretty well researched in all matters MS at this point, but it was actually a really helpful couple of hours. There is always more knowledge to be absorbed and I learned a lot without getting lost in the weeds on all of it. It totally reaffirmed for me that balance, fine-tuning and tweaking to what works best for me is always the best option.
Stress is particularly noticeable in people with MS because, as they explained, stress is always your body’s number one priority. It will deal with stress first and then move on to other issues it needs to address. In the case of MS, if you are stressed, your body is working to deal with that instead of avoiding the “potholes” in the metaphorical road that is your brain aka the lesions or scarring that are causing your nerves to go haywire.
In hind site, when it comes to travel on the roads that exist on a larger scale around here, any Summit County local knows not to plan a Denver day for a Friday when you will be heading back up the hill at peak rush hour along the I-70 mountain corridor. Well, I didn’t do that. So I had some time to sit in traffic and contemplate. I thought, “Oh my, God. What if the purpose is to just be.” Think about it, why is sitting in traffic so frustrating? Your ego takes complete hold of the situation, you are the center of the universe and you are so much more important than everybody else. It doesn’t matter where everyone else is trying to get to, and all this traffic is holding YOU up from where you want to be. This is stressful because expectations about your level of importance aren’t aligning with reality. On the other end of the spectrum, I understand why people are hesitant to want to think they’re not extremely important. Don’t misunderstand. You are important, you just don’t have to sink to the level of “Nevermind then, what’s the point?” You still matter even if you are not the center of the universe. Of course you do. You’re very important, you’re just not the only one that is. And it doesn’t take something earth shattering like curing cancer to matter. What if your worth isn’t determined by your actions but by just being?
I think a lot about stress management with my MS. It gets drilled into your head…stress management, stress management, stress management. But what does that actually mean? Sure, take a walk, meditate, do yoga. But if you’re just going through the motions that stuff isn’t going to help unless you’re actively sitting with some of these feelings or practicing a connection with what I call my “inner peace pool.” Recognizing what comes up emotionally without getting into analysis paralysis is tricky, but I’m enjoying watching where my mind is travelling as I physically crawl along the highway on my way home from Denver.
I’ve been reading the Power of Now which has given me many great epiphanies, and real life situations like this help me put them into perspective and practice. I do have a choice how I react, or don’t react, to certain situations. It’s really hard in the moment, but as I look back at how I could’ve handled the conversation I just had with my husband a few minutes ago, I’m at least aware of what feelings came up, what I said and how finding my inner peace pool can be more productive for me and those around me moving forward. I’ve got a lot of my plate right now and adding steroids to the mix doesn’t help. I know that can be misconstrued as and excuse, but I think these are important reflections on what is happening and how I can be better at embracing and being comfortable in the now and the unknown. Not doing so is the source of a lot of stress. It’s taken me some time to figure out that the unknown is the cause of some stress, and I tried to account for that by planning and putting reassurances in place. By thinking about it too much. Now I’m realizing that I need to be alright in the unknown. It’s time to pull up a chair and get comfy here. There is only so much I can do by way of controlling the controllable. The rest is up to the powers that be. So, just breath. And just be.
When I walked through my door a few hours later, I rounded out may day with what turned out to be an intense yin yoga class that ended with some releasing meditation. I like the Yoga with Kassandra videos on YouTube. She had me repeating, “I am calm, I am at peace, all is well and I am safe.” It hit me and I cried. Like, a lot. But not in a sad way. In a huge relief kind of way. It is okay to cry out the tension and release the stress! And just because you do that, doesn’t mean you have to live in that space forever. Let it all go for a little while and then move on. Take some time to make space for yourself to stop analyzing and planning and just be. Trust. It is okay and it will all be okay.
I feel like there was so much personal build up to the first dose. I was nervous, scared, excited. I went to the infusion center and 5 hours later came out with 300mg of Ocrevus in my system. So how did it go?! How did I feel? Well. I woke up the next morning. I was 24 hours in and I hadn’t blown up yet. Of course, I obviously didn’t believe I was going to spontaneously combust. But anything is possible, right? I will say that although My B cells may be exploding, my body seems to be holding up just fine.
Still, the whole thing is nerve wracking to think about the potential allergic reaction or risk of a deadly brain infection. It was a relief that the infusion seemed to go well. I didn’t really feel that different other than being pretty exhausted and hitting a wall a couple of hours later. Because of the potential for an allergic response, they give you an antihistamine. Good ol’ Benadryl put me to sleep for a little while, and the Solumedrol steroid made me feel weird for a little bit. I was a little annoyed because I was looking forward to reading my book undisturbed for a bit with this view.
But, for the most part the few hours of infusion with the medicine went alright. No immediate reactions. I paid attention to how I was feeling for a while. A couple hours post infusion and was super super tired. After running a couple of errands it was definitely time for a nap. No itchy throat or heart attacks from what I could tell, so carry on.
I was pretty tired on day 2 but nothing out of the ordinary. On the flip side of my worst fears, was I expecting some miraculous transformation? To never feel a symptom again? No. I don’t particularly care for the in between waiting game, though, and I just want to get dose 2 out of the way. I remind myself to be patient. From what I read online, the drugs can take 6 months to a year to show improvements in existing lesions or to stop new ones from forming.
Overall, though, I felt pretty good leaving that medical office on Peak One Drive in Frisco. I didn’t die. The sun was out. I was feeling hopeful. I was all excited to write my next blog post about all of the wonderful warm and fuzzy feelings I was having. All my thoughts on how good days are great, but are also hard days, albeit in a different way. You forget about the bad days. You think geez, what was all that fuss about and why am I even doing all of this? I’m fine. The over analysis begins again about the severity of my condition and my plan.
Then I got busy with work and didn’t have a chance to get those thoughts down in my blog. Then I had a bad day. And guess what? They suck, too. Thanks for the reminder, in case I was worried about my good days influencing my plan forward too much. The evening of night 3 post infusion my left foot all the way up through my left mid-back is burning. I’m in pain and it feels like an itch I cannot scratch. I don’t sleep much because of the Neuropathic pain I am feeling physically. My mind won’t stop trying to figure out what the trigger was, and did I do it to myself? Was it worth it to have that glass of wine with my Valentine’s day dinner? I’ve been here before, pleading with myself. Telling myself and whatever is out there for Gods and Universes that I will stop doing whatever it is that triggers this, just please, make it stop. Is this permanent? Is the medication not working? This sensation is only on one side of my body, is it an early sign of PML like all the pamphlets say? I stress and then I get hot flashes. The hot flashes make me stress more and the sleepless cycle begins. I finally get out of bed and see if a couple of Ibuprofen will take the edge off. It’s nerve pain, not a sore muscle and I know I’m just trying to treat the symptom not the cause, but I just. Want. To sleep.
So how am I feeling today? Not great. But not my worst. My leg still hurts, thankfully a bit less than last night, and the skin up my left side is super sensitive to touch. I’m tired and cranky. I miss my happy hopeful self. But I know that part of me is just not showing itself right now. I do have faith that I will be okay. How I am feeling right now is just temporary. It always is. Stay tuned and I will let you know how it all unfolds. I’ve got another injection two weeks from the first one, and then after that hopefully every six months. A follow up MRI in April may show no evidence of disease activity. Fingers crossed!
When people find out that I have MS, they often ask first about my diet in more detail – what I eat and how it makes me feel. We have some pretty interesting relationships and attachments to food that go way beyond it’s physical necessity. But, I think people know deep down that what they eat, too, is effecting their bodies – for good or bad, whether they have health issues or not, and they want to know more. The food that you eat matters.
Google defines diet as:
a special course of food to which one restricts oneself, either to lose weight or for medical reasons. (ie) “I’m going on a diet.”
Sure, I’m doing this for medical reasons. But, a diet isn’t always about what you cannot eat. It’s about what you put IN your body as well. Google also defines diet as
the kinds of food that a person, animal, or community habitually eats. (ie) “a vegetarian diet”
I prefer to think of my diet as what I choose to eat. I saw something on Facebook the other day that said something to the effect of “what you put into your body either fuels it or damages it.” It was kind of an ‘ah ha’ moment for me. I’ve always considered myself to eat pretty healthy with some very obvious not so healthy moments of weakness. French fries and ice cream for dinner and such. I figured it all evened out. When you look at it this way, though, is it really worth it to eat that piece of pizza if it not only isn’t good for you, but actually damages your body at a cellular level? And what if the good foods I eat are not only not doing damage, but are beneficial and contributing to healthy functioning cells in my body? That they can make me better?
If you want to explore this concept further, I highly recommend the Wahls Protocol It is written by a doctor who has MS. Who, through diet and lifestyle changes is now out of her wheel chair and walking around unassisted. And it wasn’t some magic pill that did it. In this book, author Terry Wahls makes the argument that whether you have heart disease, MS, Rheumatoid Arthritis, diabetes or one of the many other chronic conditions that so many of us suffer from, that we all actually have something in common – our cells aren’t being fed what they need to work properly. And thus the concept of Food As Medicine was introduced to me. I had immediately started doing research into diets that are good for people with MS when I was diagnosed, but have since taken it’s priority level to one of utmost importance after reading Wahl’s Protocol. Watch her short Ted Talk on “Minding Your Mitochondria” It is why my goal is to eat 9 cups of vegetables a day – something a lot of people gasp at. It might be considered radical by some, but actually makes a lot of sense when you think about it.
I know that I do need to be realistic. There is no cure for MS. Just like a magic pill won’t necessarily make all my symptoms go away, what worked for Dr. Wahl might not work for me. I do, however, blame myself sometimes for my flare up in December. I probably haven’t been as strict as I could be with my diet. It’s hard to go to a friend’s house for dinner or out to eat and not feel like a complete pain in the ass. The more I research, though, the more I believe in my food choices and the more comfortable I get with managing social interactions around those choices. I try my best to stick to the plan, without stressing too much about what I eat in certain situations, and consider that a trade off I am willing to accept at this point so that I don’t have to lock myself in my house with all my vegetables and loneliness. I believe I have avoided immune suppressing western medication through certain lifestyle choices for the past nearly 4 years. My most recent flare up was a wake up call that I may not follow the exact path of Dr. Wahls, and that is okay. Bottom line is, what I eat (or choose not to eat) makes me feel sooo much better. I also shouldn’t feel like a failure because of my decision to try out a disease modifying treatment recommended by my MS specialist. Even though he says I can eat what I want, I truly believe that is not the case. Why would I want to make it worse by eating foods that the medication also has to try and work against? If the steroids I have been prescribed for my flare ups reduce inflammation, and anti-inflammation helps the body stave off or deal with flare ups, why would I not try and tackle inflammation in my diet and lifestyle choices?
I am not going to lie. Figuring out what works for you body is a process. A reaction like a stomach ache, acne breakout or an MS flare up can take days or weeks to sprout up. Sometimes you don’t notice them because your normal baseline is off entirely. If you are curious about how your diet is effecting you particular to your unique biochemistry, I would definitely start with the Whole 30. Instead of eating all the things and trying to determine what triggers what, you eliminate anything and everything that has been linked to inflammation for a month and then add each food group back in one at at time. It is incredibly helpful in determining what your body does or does not like.
I went through years of denial about the gluten intolerance I have. It is not good for my digestion, I finally accepted. So it wasn’t hard to nix that for anti-inflammatory and MS betterment purposes. Cheese was hard. But again, my best tid-bit of advice here is to focus on what you CAN eat vs what you cannot. A lot of people ask, no dairy, no gluten, what do you eat? Lettuce??? Well, yes. A lot actually! But honestly, throughout this diet journey my food experiences have expanded. For example, did you know that tuna salad can be more than just canned fish and mayo mixed together? Mind. Blown. I made a tuna salad the other day with tuna, greek olives, olive oil, red wine vinegar, tomato and onion. Slapped it on a bed of baby spinach and kale. It was amazing. So when I get the question, “what do you eat, lettuce?” I say, “why, yes. I love lettuce. But, no, it’s not ALL I eat.” I also dine on a whole lot more. When people are persistent that I eat more, did I get enough, am I sure? Or try to make me something they think I can eat, I remember their intentions. That they mean well and care about me. I certainly don’t expect them to adapt to my eating habits or keep up with what new research I’m reading on the negative effects of soy beans these days. And I promise you, I am getting enough to eat! I probably just don’t fill my belly with the same things you do. I promise I’m okay! I am by no means starving and am learning to have protein rich snacks handy in case of emergency. With a little foresight and preparation I’m feeling well nourished and satisfied.
Warning: Whole 30 meal prep was a bit intense. I mean I was making my own ketchup and mayonnaise for goodness sake. But it was an important experiment and I learned many lessons. Like sauces. And spices. And there are easy ways to make the same vegetables or meats taste completely different and exotic each time you make them. I hadn’t realized until Whole 30 that sugar is in freakin’ EVERYTHING. It’s amazing I didn’t realize how much sugar or dairy I was eating until I tried cutting them out. A big lesson for me was considering what I put into my mouth before mindlessly popping it in. I don’t do as much food prep now, but I’m conscious of it and when I’m cutting up an onion for dinner. I’ll cut up a little bit more and save it in a container in the fridge so that I have a veggie to throw in a scramble in the morning. Overnight oats are ridiculously easy. Add a scoop of almond butter for protein. All great take-aways from the great elimination experiment that was Whole 30.
And eliminating certain foods has forced me to get more creative with meals. Food exploration can be fun, you guys! My husband has been very supportive, but isn’t as strict about his dietary consumption as I am. He hasn’t put any pressure on me to do so, but I felt the need to make what we eat extremely delicious in order to prove to him that good food doesn’t have to taste bad. I’ve learned to not be afraid of the ‘Pinterest fail.’ Just go for it, or make up your own dishes. You can do it.
I swear to goodness this took me about 97 seconds to make. It’s basically toast with bananas on it. (Gluten free toast of course) I added a honey drizzle and ground flax seeds for pizzazz and nutrition. I had a bag of pecans that I toasted up one day, again took about two minutes to make them, and now I have a jar on my countertop. I put them on everything. (Great on salads too!) Simple.
Salads are another new adventure. When you’re gluten and dairy free you have to get a little crazy, maybe add some protein. Gone are the days of iceberg, some shredded carrots, mealy tasteless tomatoes, and cucumbers slathered in ranch dressing. I assure you I’m no rabbit. I’m an omnivore and loving it! Now if we can only respect what we eat. It died for us. Stop torturing it before we slaughter it. But I digress. My point is that it doesn’t take that long, cost that much more and you don’t have to be Martha Stewart or Ina Garten spending all day in the kitchen to make and create beautiful healthy meals. It takes the same amount of time to chop everything up and then arrange it in a pretty pattern as it does to throw it all together. You do, however, have to make a choice to want to be healthy.
Another warning: You can’t go back from Whole 30. My idea of dessert now is a dried date! After cutting out added sugar for so long, fruit has become much more appealing. Luscious strawberries and juicy peaches are 1,000 times better. Like alcohol, I do have guilty pleasures, and my diet compliant treats such as French fries are just that. Treats. They don’t need to make up the majority of my diet anymore.
It’s taken a while to adjust to my new normal. But that’s the name of my game these days. Always adapting and adjusting. No, I won’t cure my MS (or expect you to cure your inflictions for that matter) by eating this way, but I will feel a heck of a lot better. There is also a good chance the reduction in inflammation will help prevent flare ups that cause permanent damage. It will help my medications, herbal supplements and other disease modifying therapies work better. I’ll be happier. Why would I want to make it worse?
I’m not saying my plan is perfect. I’m still figuring it all out. And it doesn’t mean what I do is going to be best for you. Find your happy and healthy. I suggest exploring your diet as a way to do that. I also want to give you the courage to make the decision and stick to it. You are what you eat has never rang more true for me, maybe that will be the case for you as well. Start small and don’t get overwhelmed. Also let go of the end result. I found myself getting really stressed out because of all the things I wanted to accomplish. “I’ll be feeling so much better when I drink more water,” or “I’ll stop feeling this tingling sensation in my legs if I just give up ice cream.” Newsflash: You can’t control the future.
Letting go of the future and any expectations has helped me in so many ways. Living in the now helps take the pressure off. It let’s you move forward, if only one small step at a time, and also lets the benefits unfold as they’re supposed to. “I’m going to have such ripped abs when I do yoga every day for three months” et cetera. If you just focus on the current moment, the stress of the end result melts away and you’ll have those health benefits before you know it. Maybe even some bonus unexpected ones, so don’t limit yourself.
You may also ask, what does everyday cooking look like for me? I use some replacements like cauliflower instead of potatoes. Tapioca flour instead of wheat flour to thicken soups. Shepard’s pie and cheese burgers look different these days. However, once you let go of the emotional attachment you have to some of these things, and stop eating certain foods, you do eventually stop craving them in their original forms. Or at all.
I have become addicted to feeling better. Despite my MS, I feel better now than I ever have. I truly feel radiant with health and vitality most days. I used to be so tired that I would have to pull over while driving on a regular basis. I have more energy than I can remember since being a kid, and don’t get that afternoon crash most days. I promise you, diet changes do get easier over time. Once you eat kale 3 times a day, you start craving kale at every meal, and although I still have emotional attachments to certain foods, I promise you won’t even miss the bread or cheese once you start eating cleaner. Plus, when you are trying to eat 9 cups of vegetables a day along with healthy fats and proteins, there really isn’t room in your stomach for a whole lot else.
Believe me, it hasn’t been all carrot sticks and hummus my whole life. I have many a fond memory of devouring hobo pies around a camp fire. Of downing entire boxes of mac n’cheese after a night out. Or just because. Whole 30 opened my eyes to my relationship with food. I now know that nobody can take those memories away from me. I just maybe shouldn’t be eating sleeves of Ritz crackers and fluff anymore. I don’t need to associate the sentimental value of those memories with the food I eat now.
With a combination of Wahl’s Protocol and Whole 30, I feel a lot better. My work isn’t done, though. I am still committed to being the best I can be, so I’m committed to the journey and tweaking it as needed. As I mentioned, everyone’s biochemistry is different and it takes a long time to work it out. So have patience. I also suggest reaching out for support. I have gotten a lot of help from my acupuncturist/nutritionist Lynne Drakos over the years. I also plan on seeing a homeopath doctor who specializes in food sensitivities to see what kind of perspective I can gain there.
I’m not here to tell you it’s going to be easy. It’s not at first, especially if you’re used to eating a different way. But you have to make a choice to make it a priority. Drinking more water is a great place to start. It’s one of the easiest things you can do to improve your health. Aim to drink half your body weight in fluid ounces a day. It’s easier if you haul a water bottle around with you everywhere you go, especially one with a straw. It makes it easier to sip on throughout the day.
It’s crazy I had to do some soul searching to eat differently. Like I said, we attach a lot of emotion, among other things, to what we eat and it all comes rushing at you when someone says “would you like a piece of birthday cake?” Or feel guilty when people go out of their way to accommodate you. You have to let go of feeling like you aren’t worthy of making requests. Speak nicely and with clarity, don’t ask for too much, and be okay with the side salad if that’s the only think on the menu you feel comfortable eating. Let go of the stress and guilt you’re creating for yourself. You have made a decision and you are sticking to it. Be proud of that. Also don’t feel so bad if you’re not 100% perfect because hey, nobody is perfect and you’re doing your best to balance it all.
To the nay-sayers who say, “yeah, well, you gotta live” or “it’s not all as easy as you make it sound.” No. It’s not. And to that I say you have to ask yourself what it means to you to live? It’s taken me years to come to terms with what I can and cannot eat. And I’m still adjusting to that along the way. But I’ve made a choice to feel my best. And that is living to me. Not the Reeces Peanut Butter Cup that I have to pass on. It is not all rainbows and sunshine. It can be quite frustrating. Just because something works this time, doesn’t mean it will the next time. So, I am trying to add as many tools to my toolbox as possible. That way I have options to deal with challenges as they come up.
It is disappointing to do all this work to be healthy, have some really good days and feel great. You forget about the bad days and think, “that’s it I made it.” But in truth, my MS is always there lurking underneath and there is no cure. Western or Eastern. But I of course don’t want to make it worse if I can help it. I am overall doing great and I don’t want to get discouraged. I try to remind myself often that I am helping by making lifestyle choices that make me feel better. I am controlling the controllable.
Some things are out of my hands. I found out the other day that I am JC virus positive. That increases my risk for PML, the deadly brain infection. This means that Tysabri is off the table. Ocrevus it is then. I’m feeling so torn about starting an immune suppressing drug, if you can’t tell already. I care so much about my body. All this work to feed myself healthy nourishing foods all the time. I love my body and I’m sad that I’m going to be hurting it. I will be willingly and quite literally exploding all of my B cells within my immune system. That is how Ocrevus works. I apologize to myself because I tried to avoid this for as long as I could. I don’t know how my body will react to this mediation, but I do still have a say in all this.
Next up on my agenda: I need to look into Aryuvedic cooking more, as it takes into account your specific body type, your environment, the time of day, the time of year. It is a form of ancient medicine that I believe I can draw more insight from. You know, tools in the tool belt and all. I owe it to myself to explore my options. The AIP diet (Autoimmune Protocol Diet) has also been recommended to me for obvious reasons. So, more to come on those. I’ve seen huge improvements with everything I’ve done so far. Let’s see what else I find out. Here’s to continuing the food journey. Cheers. Aimee
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!