a-test-in-resilience

A Test in Resilience

I am not complaining when I say it’s been a rough couple of months for me. I am just stating a fact. I lost Lytton, re-started a DMT with unexpected side effects, and recently dealt with a training setback. It’s been a test in resilience from October 2019 to February 2020. I think I am passing, but I am still in the middle of it, and I know my perspective may be wrong.

Initially, I planned to make this post about my running. I entered two marathons for 2020: one in March and November. The March marathon would be my first ever, after several years of running multiple half marathons. I made it a goal to qualify for Boston, my college hometown, despite my MS.

#GOALS

Qualifying for Boston is a multi-year goal. I am not fast enough at this point, and I am only able to get myself down to 9:15 minute miles for 3.1 miles. I need to get myself down to 8:09 or faster for 26.2 miles to qualify. The first step is to run a marathon to see if I can even run one, let alone train myself to such speeds.

Granted, training to those speeds wouldn’t be awful even if I never qualify for Boston. It’ll put me into competitive waves with local races, and gives me a healthy fitness goal. 

I chose a March marathon for my first because it’s the last of the season, locally, until the fall due to Southern temperatures. It was deeply symbolic because I ran my first half marathon at this race in 2013. It’s also a day before the 2020 Olympic trials. All signs pointed to this being a perfect test run on whether I could even finish a marathon.

But by mid-January, I recognized that I was in the middle of a massive setback, and I needed to listen to my body.

Running as Disease-Modifying Therapy

Before I delve into the first setback, I want to talk a little bit about the importance of running to me. I mention it in passing on the blog because I am of two minds about it. On the one hand, I recognize how fortunate I am to be doing it with MS. I know not everyone has the same freedom of mobility I do. I want to be sensitive to that. On the other hand, I want to show that mobility-impairing diseases, like MS, don’t have to stop you from being physically active.

I try to walk a fine line between being sensitive and promoting healthy living. This year, I wanted to explore what running means to me as I train for a marathon and work towards a balanced life with complementary therapies.

Running is my primary form of managing my MS. It is the umbrella that all my care falls under, whether it’s eating or stress-reduction. I am chasing a goal of getting faster in my races; therefore, I make healthier eating choices to fuel my body appropriately. The act of exercising lowers my stress and gives me meditative moments when I am alone. Running helped get me to a physical space where I think Tecfidera will be more effective.

I credit running for balancing my mental health. I know this isn’t possible for everyone, so I acknowledge my privilege. But once my mental health stabilized, I was able to make other changes in my life that benefited how I managed my MS. It is a form of disease-modifying therapy for me.

And then I experienced my first setback.

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what-its-like-taking-tecfidera

What It’s Like: Taking Tecfidera

For January 2020, I committed myself to get back onto MS Disease-Modifying Therapy (DMT) or Disease-Modifying Drugs (DMD). My rationale is that while I am managing my MS well without medication, any DMT provides an insurance policy against disease progression. My healthy living changes were always with the end goal to work as a complement to my DMT. And as a blogger, I wanted to share what it’s like taking Tecfidera as a DMT.

Part of the reason why it was so quiet in January is because I focused on getting onto Tecfidera, managing my self-care, and my regular mother duties.

What follows is a brief introduction to Tecfidera, my experience getting back on it, a comparison to when I first took Tecfidera in December 2014, and my final thoughts on the whole experience.

As per my medical disclaimer, I am not a medical professional, so please take what follows as my personal experience and anecdotal, not scientific fact. If you are on Tecfidera or consider taking Tecfidera, you may find your experience varies from mine. 

The Medication

There is information on the website about Tecfidera, so if you are thinking about taking it for your MS, I recommend going directly to the source for your research. I wanted to highlight information that related to my experience.

Tecfidera is a DMT that is believed to “modulate the immune response to be less inflammatory and […] could be protective against damage to the brain and spinal cord.” It helps keep your body from inflammation, a common problem with MS exacerbations. Biogen isn’t able to pinpoint what about the drug works, just that it helps reduce the occurrence of exacerbations. In a 2-year study, 27% of the people on Tecfidera found their exacerbation cut by 47% (compared to a placebo). 

Note: Biogen only links to two two-year studies.

Some of the known side effects include flushing and stomach pain, usually within the first month of starting the therapy. Flushing can occur anywhere but typically face, chest, and hands. Stomach pain can range from mild discomfort to physical distress. Both of these side effects decrease the longer you take the medication. After a month, the stomach pains typically end, and within several months, the flushing stops. 

Tecfidera is also known to bring on Progressive Multifocal Leukoencephalopathy (PML), a disease that attacks your brain and leads to death if not treated. The JC Virus causes PML. Most adults carry the dormant JC Virus with no ill effects, but taking Tecfidera is known to reactivate the JC Virus. Unfortunately, three MS medications do this. Fortunately, getting PML is rare.

To combat this, Biogen recommends getting frequent blood tests to check for JC Virus antibodies. If you reach a specific number of antibodies in your blood, then there’s a chance you have PML and should stop your DMT immediately. If your prescribing doctor does not recommend regular blood tests, please ask for them.

There are more side effects, warnings, and suggestions related to Tecfidera, so I recommend you check that out here.

Biogen provides patients with a tapering pack when you begin the therapy. This pack includes fourteen 120-mg pills: take one 120-mg pill twice a day for seven days. It also consists of a container with 240-mg pills, which is the normal dosage: you take one 240-mg pill twice a day for the rest of the month.

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balance-harmony-chronic-illness

Balance & Harmony in Chronic Illness

2020 is now upon us, and that means a new blog theme for the year at MS Mommy Blog. 2020 is the year of vision: think about the importance of 20/20 vision, and the phrase “hindsight is 20/20.” It is also a year of balance, something that happens once a century. With that in mind, I wanted to focus this year’s theme on balance and harmony. While the year itself holds no power, we can use it to remind ourselves of the importance of incorporating balance and harmony in our lives with chronic illness.

I feel that focusing our energy on personal balance and harmony is timely considering the surge of global unrest and the role this year plays in American politics. I promise never to get political on this blog, but what I will advocate is finding ways to give yourself a break when the news gets to be too much. 

2020 is a year geared towards making a commitment to yourself and finding what keeps you centered in the face of politics, painful news stories, your health, your professional life, and your personal life. There’s a lot to handle this year, so now is the time to say, “I can handle it healthily.”

Let’s take a quick look for what to expect for the rest of this year.

Looking Ahead

In the coming months, look forward to posts on the following themes:

  • Moderation in our habits & mind
  • MS Awareness
  • Further examination with self-compassion in the face of physical limitations
  • Learning to balance strong emotions
  • Working through mental imbalance and bringing that into harmony
  • Embracing self-acceptance
  • The importance of work-life balance with a chronic illness
  • Embracing self-care for overall satisfaction
  • In the face of uncertainty, finding internal balance
  • Healing from disappointment and external turmoil
  • What is inner peace and how to find it

Balance & Harmony in a Chronic Illness

So what is balance and harmony with a chronic illness?

I am hoping that this year will help answer that question. I have my ideas of what it looks like for me, but as I do an in-depth examination into what others say on the matter, I might find my answer changes. I want to spend this year exploring this theme not just for myself, but for my readers as well.

Like last year, I will be chronicling my journey as I learn more about myself and what helps me manage my MS

New Features to the Blog

2020 is a year of different opportunities for me that I want to share with you. I plan on having several new features that run weekly or monthly on the blog. These include:

The weekly newsletter will be revamped shortly, so look for new newsletters in the coming weeks. If you haven’t signed up for it yet, please do so now!

Attention to Chronic Illness Bloggers!

The MS Mommy Blog is looking to collaborate with other chronic illness bloggers for this year. If you have a chronic illness blog and would like an opportunity to tap into the MS Mommy Blog audience, please contact me here. I look forward to hearing from you.


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Featured photo credit: Canva


2019-a-reflection

2019: A Reflection

For the past two years, I’ve written a reflection for the last post of the year. Read 2017 here and 2018 here.


2019 was the year of the crucible. I underwent a lot of “lessons” in life; some brought on via self-reflection and others brought on by the natural flow of life. I learned a lot about myself, my capabilities, and where I see myself going in the future. In the three years, I’ve done these posts, it was the most challenging year emotionally, but the easiest year relating to my MS.

The Down Points

  • From October to December, I encountered some of the most challenging months in my adult life. These months rivaled my diagnosis with all the emotional upheaval. I lost Lytton in November, one of my forms of emotional support, while dealing with other challenges at the time. It felt piled on.
  • I continued to do a lot of heavy self-reflection, particularly with my role in my relationships and anger. The self-reflection often left me drained, but I am getting better at managing both. 
  • While I am getting better with my time management, I still struggle to get ahead on my work and stay ahead. With the past few months of upheaval, I’ve fallen drastically behind on several projects. I am struggling to get back into the swing of things. Additionally, I am grappling with being kind to myself because of this lag. I am seeing missed time as time wasted.
  • I am fighting against a victim mentality that crops up when experiencing a downcycle. My cat passed, I am falling behind, I am struggling to achieve goals, etc. – all played into previous internal tapes of “woe was me.” I have moments where I curl up in bed with a book or my phone to escape, but I try to set myself a timer to break out of it and be productive again, even if it’s with one task.
  • This last one needs to be at the end because it straddles a down point and positive point: getting back on my medicationThe down aspects of getting back on Tecfidera: it definitively means Ash and I are stopping with Jai for children, it’s a physical acknowledgment of my MS, and the pain I am about to undergo with the first month of side effects. 

The Positive Points

  • I decided to re-start my medication because I knew it was the right thing to do for my health. By re-starting Tecfidera, I am creating a more significant buffer between my well-being and my MS. It is an insurance policy to help me manage my MS when I have another downcycle of stress/emotional change. It’s also a physical acknowledgment, to myself, that my health is worth it.
  • I rediscovered my love of reading this year. It’s been over ten years since I sat down and read a book for pleasure. While in graduate school, I was afraid of wasting time on pleasure books when I could be doing research. I also found that graduate school temporarily blocked my love of reading because of all the heavy lifting I did. But I vowed to read more for the blog, so I started with audiobooks and graduated back into the physical medium. As I started getting into depths of the emotional upheaval that was this fall, I read more to escape. I found reading to be a soothing distraction, educational at times, and it also sets an excellent example for Jai. I plan to continue to read more in the coming year.
  • While my time-management was less than ideal, I learned that the more organized I am, the more satisfied I feel. I also found that I am less stressed if I have a flexible plan in place. I am less likely to put things off, though I still have my moments of procrastination. If anything, I learned that I am one of those people who benefit from structure, minimalism, and organization.
  • Last year I contemplated the role toxic friendships played in my life while feeling frustrated that a lot of my relationships had harmful elements. I recognized I stacked my friendship cards against me by rejecting or minimally pursuing positive relationships in my life. This year, I opened myself up to new relationships while maintaining my sense of self, something I hadn’t done before. Because of it, current friendships grew more profound, and I made a bunch of new friends along the way. 
  • My running took off this year. I ran in three different states (Florida, Nevada, and Wisconsin), and even PR’d on a half marathon, almost making it below two hours. I officially decided that I would begin the process of qualifying for the Boston Marathon. While I have a long way to go (like running a marathon in the first place), it’s a goal I’ve created for myself to see what I can achieve. I think my running has helped me manage my MS and my emotional well-being, along with getting me in a healthier space.
  • While it hasn’t been my most traveled year, I did get around the country quite a bit for 2019. I traveled to Florida for a Walt Disney World running weekend in January; I went to Las Vegas for my best friend’s birthday in March; and to Wisconsin twice (July & November) to visit with my in-laws. It was a year filled with a lot of new experiences, which I enjoyed very much.
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Immune & Energy Booster Turmeric Shots

This post was originally published in December 2017.


Several years ago, I participated in an intensive yoga course, which required attending classes at a local studio almost daily and first thing in the morning. This was before my diagnosis, but just after I experienced my first flare-up, so fatigue was an issue for me at the time.

I was complaining to another student while we were waiting to step into the studio about how tired I was. We were doing a strict detox diet, and coffee was not on the approved list. She pulled this small bottle* out of her bag and handed it to me.

Her: “It’s a turmeric shot. These things are great natural energy boosts.”
Me: “Turmeric? As in the spice?”
Her: “Yeah, have you heard about it? It’s got all these great ayurvedic properties, but it’s been found to boost your energy naturally. It’s more potent than caffeine.”
Me: “And it’s safe?”
Her: “Absolutely. It’s all-natural. Just try half of it and let me know what you think after class.”

I tried it, and she was correct. I felt extremely energized. I was almost shaking to get the class started, that’s how powerful it was for me. I will add this note: it was the first of any sort of energy drink I had in weeks. We couldn’t even drink green tea, so the results might have been slightly skewed due to my body just going into overload.

I didn’t get a chance to follow up with the turmeric as an energy booster after that experience. But it stayed in the back of my mind. When I read about the benefits of turmeric in the diet for brain health and as an anti-inflammatory, I decided to look back into it. It might be worth trying to help manage my MS.

The Health Benefits of Turmeric

What makes turmeric the wonder spice is the curcumin. Curcumin is believed to be a beneficial supplement to fight Alzheimer’s due to its anti-inflammatory and brain-boosting properties. It also is found to have cognitive-boosting abilities, though this needs to be researched further. It can also help prevent certain forms of cancer.

These two things alone: inflammation and cognition are issues a person with MS deals with daily. I am not advocating forsaking all other forms of MS therapy. I am adding it to my daily diet to supplement traditional forms of MS therapy. And as a runner, the anti-inflammatory benefits are beneficial to recovery.

But the energy/metabolism and the immune benefits? This becomes a universal appeal for daily consumption of turmeric. Even if you don’t have MS, having a natural way to get more energy and boost the immune system will be beneficial to your health. It may not cure a cold or prevent getting one, but it will give you that extra boost your body might need.

Making My Own Turmeric Drink

Before removing sugar from my diet, I found it harder to stomach turmeric even in a drink form. The taste was too weird, and I needed something sweet to help cover it up. It’s how I handled flavors I didn’t care for in the past: add sugar to make it more palatable.

A few weeks after quitting sugar, I bought several shots of turmeric for an early morning road trip I was making to Tennessee. I took some sips and found that I actually enjoyed the flavor and felt quite the energy boost. Sugar struck again as a ruiner of flavors. Now that it was out of my system, I was able to enjoy something I previously disliked.

But what took my breath away was the price per bottle. I could drink one bottle per day for the health benefits, but my wallet wasn’t going to be fond of the ~$6.00 per 3 fl oz. I knew I could make it even cheaper.

I found a couple of recipes online. However, they didn’t adhere to the vegan diet. They used honey or some other animal-based additive. I decided to create my own recipe. Below the break, you will find my recipe and some ideas for modifications.

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