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One of Those Days: Chronic Illness Sucks

One of Those Days: Chronic Illness Sucks


A Prayer

Refuse to fall down

If you cannot refuse to fall down,

refuse to stay down.

If you cannot refuse to stay down,

lift your heart toward heaven,

and like a hungry beggar,

ask that it be filled.

You may be pushed down.

You may be kept from rising.

But no one can keep you from lifting your heart

toward heaven

only you.

It is in the middle of misery

that so much becomes clear.

The one who says nothing good

came of this,

is not yet listening.”

― Clarissa Pinkola Estés


I began writing this post over two months ago and could not find the motivation to spend another minute on the challenges of chronic illness. It seemed to be a bit too “woe is me” and I hate to sound as if whining about things, it is not in my nature.  What prompted a return to this draft was a series of events that cast me back into a much darker place of “why me” regarding autoimmune diseases and the way in which illness permeates every corner of my life, even if I like to pretend otherwise.


Spring has a history of being difficult on me. It is this time of year that I was diagnosed after experiencing a severe relapse that left persistent issues. It is also this time of year when I struggle most with fatigue and MS symptoms that flare up constantly with little rest for the weary. Maybe it is the temperature change or the long academic year wearing on me. All I know is that spring gives me a run for my money every year.


Thursday, I woke up feeling exceptionally tired. When I say tired, I mean like having just run a marathon and ready to dive under the covers for a ten hour sleep…that tired. I have a mantra I live by of  “energy creates energy” especially in moments such as that morning. With this in mind, I made my way to the gym and limped through a workout, giving myself kudos for having pushed through the sea of brain fog and muscle fatigue. Rushing to work, I was foggy but somehow made it to school on time. Walking in the break area I grabbed a used napkin out of my bag to throw in the garbage, made a quick move on my right leg and momentarily felt the all familiar disequilibrium that plagues me. Before I could gather myself my leg gave way. I raised my upper body abruptly to catch my balance and instantly cracked my head on the hanging cabinet above.


What followed was intense ringing in my ears, pain shooting down to my feet, a leg that felt like jello and a flood of tears. Coupled with the complete embarrassment at this having been witnessed by a coworker, my day was not going well. An “MS day” as I like to call them, had outed me in the most public of ways. I had hurt myself for the first time because of the unpredictability of this illness. The tears keep coming for over an hour, something else that has changed in the past year. My emotions are like floodgates and for some strange reason I have no off button once the gates are opened. It is not depression, it is the inability to control the physical process of crying.


The day progressed with a few mandatory meetings in which I tried to pretend nothing was wrong, multiple visit from the school nurse, a risk management intervention and a local trip to the workers compensation doctor. The doctor was impressed with my vocabulary around neurological illness as well as the many tools I have empowered myself with. This did nothing to change the fact that I was sitting in a doctors office because of a balance and weakness issue caused by my constant companion, MS. Nothing could change that.


Safely arriving home after this whirlwind of events, I collapsed in a heap on the sofa completely spent from the physical and emotional drain of it all. It is unbearably humbling to realized illness can rear its ugly head at any time, disrupting every area of my life in an instant. Relaying this story to my sister, she sweetly reminded me that not everything is because of MS. People lose their balance and hit things all the time. While I especially appreciated her attempt at making me feel better, I knew my MS was to blame. I wish I could rationalize it all away somehow, but I could not. I knew how my leg and dizziness symptoms present and they did ever so grandly that morning. 


“There are going to be frustrations in life. The question is not: How do I escape? It is: How can I use this as something positive?”

― Dalai Lama XIV


A constant challenge of this disease is the need for greater emotional intelligence and sensitivity in all instances. This need has been one of my most profound teachers. I have learned I can not expect, nor should I, a suitable reaction from others in their gracious attempts to comfort me.  I have learned I will always doubt myself when it comes to discerning what is disease related and what is just age or illness.  I have learned because my illness is somewhat invisible others will want to commiserate by sharing the story of a home remedy “that works!” I have learned to be kinder to myself in all of my failings and shortcomings, when I am unabashedly sad or a bit introspective and quiet. Finally, I have learned that I am fragile in my humanity and must be loving and patient with the process.


Our lives are short, minuscule in geologic terms. We are all terminal and it makes no difference what we might be afflicted with. Pain and suffering do not discriminate and come in many flavors. One does not need to have a disease to experience all of these emotions, it is important for those with MS to remember that others have challenges as well. In some small way this understanding helps me feel much less isolated and alone. Growing older gracefully with the added challenge of illness is humbling at best. I know that I am not alone in this journey and look to others for guidance and support when I am at my wits end.  


Take a moment and really see those around you. If someone you know is suffering in some way, let them know you are there. No personal stories, remedies or suggestions are necessary. Just let them know you are sorry for their suffering and sit with them in whatever way feels right. That is it. Empathy is not providing solutions, empathy is feeling another’s pain and remaining with them in that place as support. As in all things, simple in its complexity and exceedingly difficult in action.  Illness is a constant reminder to connect emotionally with those around us and to continue to be available in this way as long as is necessary. On Thursday, I was reminded that even the worst of “MS Days” is better than no day at all. 


A Sugar Manifesto

A Sugar Manifesto

Why is it so difficult for others to accept good eating habits? Why are these same habits an invitation for opinions and comments? As one that is often the recipient of ill informed questioning and disapproving glances, I wish I had the answers. Summer is especially challenging in dodging the uninvited diagnosis of my diet. With family picnics, parades, dinner parties and weddings, this time of year is rife with landmines for people such as myself on nutritionally aware diets.


Morning smoothie packets to put in the freezer. This way I rotate greens and always have one ready no matter how busy I get.


I am baffled as to why eating healthfully has become such a point of discussion. Walking into a grocery store, I see people buying things that do not even classify as food, chock full of chemicals and fake ingredients. They look at me as if I am the one with the sickness because I choose to feed my body healthfully no matter what day it is. I never “cheat”. There is no such thing as cheating if I want to keep walking, hiking and dancing. I chose living a full life over a store bought cheesecake…hands down.


This is not deprivation in any way. My idea of a “treat” is a grain, dairy, nut and refined sugar free cookie. They are incredibly sweet to me and I never feel deprived. Some in my family still raise an eyebrow when they learn what I exclude from my diet. My father is convinced that if I remove grains, I have nowhere else to get carbohydrates and therefore must be deficient. I simply don’t have time to argue the merits of my diet any longer. I also can’t spend another minute of my life energy explaining why I only eat when I am hungry, which is usually twice a day. Why do I care if society has completely bought into the made up structure of three meals a day? People shovel food into their mouths simply because a clock tells them too. That is madness to me. We eat to live, not live to eat.




My July 4th mid day feed. Pesto Chicken Pizza from the Healing Kitchen. (AIP and Paleo).


I know this way of life works and my doctors agree. Most importantly, I feel better when I eat this way. Please consider carefully what you say the next time you attend a family function, or holiday party. Do not force ice cream on someone and give him or her a verbal lashing for not participating in your sugar fest and do not become the sugar dealer of your family.


One of the many variations of my “treat” cookies. (Paleo, Grain free, Refined Sugar Free)


Finally, please do not pass along your misgivings about how you eat to me; I categorically refuse to take on that burden. Choose to hold your tongue instead of offering a litany of misguided nutritional information. It may make you feel better for your choices, but it does nothing to me beyond making me aware how few understand food is medicine. Love yourself, cut the crap (pun intended)and feed your cells what they need. It is a gift that you give yourself and well worth the effort.



Emotional Eating, Illness and the Holidays

Emotional Eating, Illness and the Holidays


One of my favorite things about the holiday season is using leftovers to make delicious meals that last for the entire month. If you follow this blog, you know that I adhere to The Wahls Protocol. This way of eating has improved my health ten fold and has held my MS at bay. At present I still have relapsing remitting MS and have not progressed, at my age a small wonder. Yes, I have used disease-modifying drugs and am currently on my fourth, a strong b-cell depletion therapy, but I am confident that my lifestyle choices have been as important if not more than these medications.

I believe strongly in n=1 experimentation on my body and have found my sweet spot with diet, adequate sleep and exercise. It has taken a few years to get it right, but I can say with confidence that I have it down. Thankfully, I have a wonderfully open and patient neurologist that does not brush aside complimentary therapies. Even though she runs the Neurological Residency program at Cedar Sinai, she often acts more like a functional medicine doctor, looking at me as an entire system and not just what she sees on my brain and spine MRI. For this I am forever thankful.

The holidays can come with strong emotional memories that we often correlate with food. Maybe your family made the same dish every Thanksgiving and it simply does not feel like the holidays without it. Part of the reason for this blog was a need for me to find a healthful alternative to chocolate chip cookies, which are most obviously a trigger for me. Over the course of the years, I have finally come up with some recipes that fit in my new lifestyle, yet satisfies a need for comfort food. This is not without its challenges. Just this week, I used the Trader Joe’s chocolate chips instead of my usual diary free brand to make a holiday dessert. Friday was awful, my whole right side ached and I have pins and needles in my leg for the next 24-48 hours. I knew instantly that there was something in those chips that I could not tolerate, probably dairy even though they profess to be dairy free. After a day of rest, Epsom salt baths and healthy eating I felt much better. It is really that simple, food matters to me, I am not being selfish or picky. If I eat the wrong foods, my body lets me know in the worst way.


Along with food, I always make time for exercise.  Movement is not a luxury for me, but a necessity.  During the holidays, with the added stress that this time of year can bring, exercise becomes even more important. This could mean a nice hike, a trip to the gym or some lengthy stretching.  It really does not matter what I do, as long as I move my body every single day. If I do not, the spasticity comes back and my legs just ache. It feels like a vice squeezing my calves, definitely not pleasant. On most days, I have some level of discomfort, but after working out I always feel much better.

The kids and I after a family workout at the gym!

The final part of the equation is rest.  Adequate rest and relaxation is essential for mitochondrial health and for making healthful eating decision. If I have a rough night and do not sleep, my brain just does not fire quite right.  I “hit the wall” and I am no good to anyone. I value my rest so much that I make it a priority above many other things. If I sleep well, I am much more engaged with life and feel emotionally strong. During the holidays, do not feel bad about prioritizing your sleep. Turn off the Netflix, put the book down and sleep.  Use lavender in your bathwater and put some on your neck, wrist and pillow.  You will have a restful night and wake up ready to go, more able to make good choices with your diet.

Today, as preparation for the busy last weeks of the semester and the stress that this heavy schedule will surely bring, I made some healing turkey soup with the broth that I saved from our turkey. My broth turned out wonderfully as seen by the spoon standing up straight from the container!



I freeze the leftover broth in small cupcake size portions and use it for stir-fry, butternut squash soup or when cooking vegetables. With healthy choices at the ready, I have no excuse and can make just about anything quickly after a long day at work.



If you are feeling the need to revisit your health this coming year, consider treating yourself to the best gift one can give, the gift of health.  Don’t be afraid to begin because you think it will be too difficult. No one starts this journey and achieves perfection right away.  I had many moments in which I ate something that I knew I should not have and I suffered for it. It took a few years and many modifications to come to where I am, a place of balance and health. Believe me, It is well worth the effort.

Just Keep Moving

Just Keep Moving


As a trained dancer I have always identified as a physical being.  My value and worth have in part been built on my ability to attack physical tasks.  I view myself as one in decent shape comparatively to others in my age group, and have pride in the ability to continue to move on a daily basis.  I recognize that I am not the same twenty year old young women that danced ten hours a day and then went out with friends. The body begins to betray as it will in this stage of life and the discomfort of this demands attention.

The problem with this is that we all inevitably lose much of our physical strength and vitality.  It is impossible to avoid.  I hear a relentless barrage of advertising about staying “young”, “energetic” and “vital”.  Is that really all that has importance in today’s world? When I was interviewing for permanent faculty posts in my field, I was often asked the question, “Do you have the energy and enthusiasm for this position?” I felt this was a blatant display of both age discrimination and a lack of emotional intelligence. Yes, I might be a bit older than my younger cohorts, but the hope is that I am a bit wiser as well. Life experiences have allowed for a maturity that is of value in the workplace. In addition, what about all of the important spiritual work that needs to be done? If we are only focusing on the outside, who is minding the shop on the inside?  


“The human body is the best work of art.”

Jess C. Scott


My illness also brought along with it more reflection about physicality and pride. It was like the universe put up a giant STOP sign because I was simply not paying attention. Even if I wanted to exercise every day, my body was not letting me. The stress from all of the life changes I was experiencing threw my body into turmoil and now it was attacking itself. It was a cruel version of the fight or flight mechanism and so difficult for me accept.  I was used to pushing, never giving up and moving regardless of the cost. My pride was taking a hit and I had no outlet for the anxious energy that I carried without the benefit of movement.


The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.

Helen Keller


Just as a baby must learn new movement and behavior, I had to reteach myself how to view exercise. I began to tell myself that my workout didn’t define me, even when everyone else in the gym seemed to have so much control and commitment to their fitness goals. I decided that as long as I went to the gym and tried to move each day, that was a good day. Depending on how I felt or what treatment I was undergoing, I varied my routines and found new joy in things like stretching and walking on the treadmill. I looked for what type of exercise made me happy and realized that if I could hike in my neighborhood every day, I would be a forever happy, a kind of hiker high.  I committed to hiking on the weekends, weather/heat permitting, and found this to be one of the most spiritual experiences for me. I feel incredibly close to the Divine as I walk in nature, the sun on my face and the wind at my back.  It is in the stillness of these moments that I can hear my heartbeat and blood moving through my veins.  The miracle of who I am at that moment is clear, rebellious body or not.

Yes, I sometimes walk a bit too far and find my leg is heavy and numb on the way back. It is with kindness that I note how my body is feeling and rest a bit extra the remainder of the day. It is really that simple. I have no desire to experiment with CrossFit, marathons and mud runs.  I applaud others that enjoy these activities, yet see them as something that will break down my body rather than build it up. Keeping my exercise to a simple routine is calming for mind body and spirit.  The kindness I show myself is evident in how my body has managed the ups and downs. I continue to commit to showing up each and every day with grace and dignity. It feels wonderful and I count my blessings that I am able to continue doing things that bring me joy.

Hiking as a Practice

Hiking as a Practice

Hiking2I have often said the being outside in nature is a form of spiritual practice for me. In fact, I will quite regularly choose to hike on a Sunday morning rather than attend a church. What is it about nature that speaks so profoundly to me? I could not say with certainty. I might say that I feel God in the wind blowing through the top of the trees, or that I felt the pulse of the entire world within the trunk of an old tree and get the urge to hug the tree and feel all of that beautiful life. I might also say that in the actual rhythm of walking, I experience meditative prayer on a very deep level. I no longer see anything extraneous, only my feet walking one foot in front of the other. It is unbelievably calming. Finally, I might also say that just by being outside, I feel a freedom that the actions of daily life do not allow for. Space creates a sense of freedom that no amount of constricted living can erase.

I might say all of these things, but it really boils down to the feeling that I get when I am hiking. No words can do it justice, nor would I try to assign words to the experience. The mystic Hildegard of Bingen said it best with, “I, the fiery life of divine essence, am aflame beyond the beauty of the meadows, I gleam in the waters, and I burn in the sun, moon, and stars …. I awaken everything to life.” It is an awakening on every level.  A freeing of the mind to see what is, rather than what the mind believes to be true. Some assign the label of Nature Mysticism to this practice, or the seeking of spiritual awakening via nature. I hesitate to label anything. I am a party to no specific philosophy, religion or practice and as such place the same restrictions on my investigation of mysticism. I can only know and understand what communing with nature does for me. It is healing of both mind and body and nourishing for the soul. That is enough reason for me to view the time spent walking outside as sacred and I protect it as such.Hiking1

As I get older, I have developed a curious dislike of constriction. I completely understand how the elderly are often trying to take off their clothes much to the chagrin of their caretakers. As soon as I arrive home from work, I am tying up my hair, taking off my shoes and bra and throwing on some loose and comfortable clothing. It is my favorite part of the day! The constriction of our busy lives can be suffocating, leaving a constant tightness of both body and spirit. We are not meant to sit in tiny offices for hours on end. Our bodies need to move to experience their full potential, feel the wind in our hair and breathe fresh air.

This is not only a metaphorical suggestion, but a matter of life or death for me. I must move every single day or face the consequences of muscle tightness and fatigue. Multiple Sclerosis is a challenging disease. The body needs movement but often fights against it, not that much different from a spiritual journey. We stubbornly live with our set ideas, fighting against what we intuitively know to be the correct path. I like to think of myself as the tops of the trees blowing in the wind, steadfast and strong yet supple and gentle. If I can live as beautifully and connected to nature as a tree, then I have done good work.