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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Embracing Big Changes in Life

At the end of October, I wrote about the prospect of losing Lytton to a mysterious illness. I had hoped to get more time with him as we thought we had a few options to manage his health. But towards the end of November, we had to do the compassionate thing and end his suffering. I learned a lot about embracing big changes in life during that time.

While I consider myself fortunate to have a few weeks to prepare for it, I am still in shock over the quickness he went from healthy to terminally ill. From the first sign of his illness to when we said goodbye was a month and a half. I prepared, but it’s hard to move that fast for such a substantial change.

Yet, significant life changes happen all the time. Our diagnosis. Buying a house. Losing a loved one. Finding someone new to love. The changes discussed in this post are the ones completely out of our control.

Change happens. Sometimes we can prepare ourselves for it, but often we cannot. What we can do is take the time to embrace the change. Regardless of whether you consider the change positive or negative, it’s going to happen regardless of your wishes. Rather than fight it, we find a way to work through it.

How Can Change Help You?

Change can help us, even if it’s unwelcome. I don’t know when I will reach the point where I can sincerely say losing Lytton helped me. Each day, I go through all the stages of grief as I try to move through my new normal.

Yet, I admit that losing him tested the effectiveness of the wellness journey I’ve made over the past few years. I did not need the confirmation that it works. But, the fact that I still haven’t experienced an exacerbation is proof that I am managing healthily. 

Lytton’s death reminded me of the impermanence of life. I pushed death to the back of my mind as something that happens to other people but hasn’t touched me. With that attitude, I did not appreciate everyone around me in the way I do now. I recognize that anyone can leave me permanently, with no explanation. 

Finally, it reminded me that change happens, and I can get through it. The last time I experienced a “negative” life shift was after my diagnosis, almost seven years ago. I regrouped and was eventually able to move forward. 

Change, whether it’s good or bad, can help you discover essential things:

  1. The importance of taking time for yourself. If you experience a life change, negative or positive, take some time to sit with it. 
  2. Self-care, again. The further I get into life, the more confirmation I get surrounding the importance of self-care. Self-care can be in celebration or to help calm oneself after the change.
  3. How resilient we are and why finding ways to adapt is essential. While we must accept an uncontrollable change, we don’t have to roll over. We can find ways to adapt and adjust to change. 
  4. Appreciate life before, during, and after the change. We can recognize what we had before, find ways to enjoy life as it is, and understand what life might be in the future.
  5. Finding the positive in the negative. It might take some time, but there’s always a silver lining even in the negative changes. You might find comfort knowing what’s going on with you, be at peace because a person no longer suffers, or allowed to try a new career opportunity.

Embracing Big Life Changes

The key, I’ve found, is to lean into the uncontrollable changes for better or for worse. There are some changes we can fight for, opportunities we can pursue even if the door keeps shutting. But often, significant changes are out of our hands. We cannot prevent the new direction our life goes in, so we can accept the outcome and find ways to adapt.

The first step is acceptance and embracing the big changes. Finding ways to adapt follow closely behind.

For me, while I would love to run out and find a Bombay kitten similar to Lytton, I am learning to reconnect with our other two cats as a form of acceptance. Lytton was such a significant presence in our household that often, the other two cats functioned like roommates we cared and fed. I am spending more time with them, whether they appreciate it or not, and loving on them.

After my diagnosis, I fought the information, choosing to be ignorant of my MS because it was too painful to acknowledge. Behaving this way did not improve my quality of life. But once I took steps to accept and adapt my reality, I found greater satisfaction with everything.

If there are negative feelings associated with significant life changes, it’s hard to accept and adapt, especially in what we feel is a timely manner. Remember to honor your timetable, but be open to acceptance as your goal once you’ve finished mourning (death or health change). 

Big changes are going to happen in life. We have two options when encountering change: embrace it or reject it. When we embrace the change, it allows us to heal and move forward. When we reject it, it can prolong our dissatisfaction and cause stress.

In the end, the decision is ours how we deal with change.


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Assessing 2019 Goals

We still have a few more weeks left in 2019, and I can’t believe it. This year flew by a lot faster than I care to admit. I was on the phone with a friend the other day, and they pointed out how close to the holidays we were. I realized I was in denial, but as much as I would like to think there are more weeks left in 2019, we are nearing the end.

To that end, I am trying to get ahead with my goals for 2020. But before I do that, I have to begin the process of assessing how my 2019 went. Before the commotion of the holidays is upon us, I encourage you also to take a few minutes to determine how your 2019 went. It might surprise you and give you a little extra pep going into the holiday.

My Self-Assessment

I created one primary goal and four minor goals that would work to help me achieve my main goal. I decided to keep it simple this year, as I was doing something I’ve never done before: work to stick to my goals.

For those signed up for the newsletter, what I am about to list out isn’t news. I kept my 2019 goals “private” amongst those who follow the MS Mommy Blog newsletter, but at the end of the year, I have no qualms about sharing them now. My primary goal for 2019: to lose 10 pounds over the year. My four minor goals to help me achieve this:

  1. Meal planning
  2. More cross-training
  3. Run a faster half marathon
  4. Work towards being less stressed overall

Surprisingly(?), I found a measure of success in four of my five goals. My primary goal: on January 5th, I recorded my weight at 141 pounds. As of a few days ago, I recorded my weight at 130 pounds, a weight I’ve held steady for several weeks. I had two reasons for the weight loss goal: one, to get me solidly in the healthy weight range according to the BMI. Two, to help me run faster races to help me achieve personal records.

I believe that the success of this primary goal is due to creating four smaller goals that worked towards it. Each one forced me to be mindful of my eating and exercise habits, and working towards a faster half marathon meant I needed to pull my weight down.

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Become a Leader

Are you a leader? Have you wanted to be one, but didn’t know how? Or does that thought terrify you?

For some people, the idea of being a leader is appealing. For others, it strikes to the core of deep anxiety. As Uncle Ben once said to Peter Parker, “with great power comes great responsibility.” Leading is a source of power, and because of that, it cannot be tackled lightly. It is why, for some people, it creates anxiety, as they recognize this responsibility. 

But anyone can be a leader, and sometimes you become one without realizing it.

A leader does not need a large group of people, and in fact, they don’t need a group of people at all. You know the phrase “lead by example?” Sometimes living your life on your terms with your chronic illness is enough to become a leader.

I found in my chronic illness journey, even before I blogged about it, I answered questions. I set an example of living with a chronic illness. Looking back, I wasn’t particularly good at it, but I’ve hopefully improved.

Since starting my blog, it’s led to me answering more questions about MS and living with an autoimmune disease. I answer questions about my diagnosis as someone else struggles to figure out what’s going on with their health. 

Without intending to become one, I am a leader within my social groups. I don’t say this with expectation; it’s just a fact. People look to me to provide them with answers and recommendations. When I realized this happened, I recognized I needed to take the role seriously and understand all that goes along with leading. 

The key to effective and stress-free leadership is knowing when to lead and when to follow.

When to Lead

There are many situations where it’s appropriate to lead: healthcare, life, and social scenarios are a few. Besides your own life, in any form that may take due to your illness, the most crucial space you lead is with your healthcare. You cannot help others, nor can you help yourself if you are not a strong advocate for yourself.

You know your body better than any doctor. You know exactly how you are feeling, even if you do not have the words to describe it. I am not saying to reject what doctors have to say or ignore their training. But, if they dismiss you when you know something is wrong, you have to advocate for yourself.

You have to lead and assert your needs, wants, and concerns. If you anticipate resistance in the doctor’s office, find resources that can help you state your concerns so you feel heard. Be respectful to start, but increase your assertion if your healthcare professional brushes you aside.

Another space that calls for leadership, intended or not, is deciding what’s best for you and how you approach your illness. What this means is there will be times when you reject social get-togethers, leave early, or cut off relationships because you must care for your health first. Find ways to say “it’s okay if I put myself first,” as much as possible. 

People will understand that health must come first, and if they don’t, those are the first relationships you should examine.

Often, I find people respect it when I say to them that I must engage in self-care. I still struggle to pre-emptively articulate it to others. With a simple explanation, I can express why I am quiet or declining social events.

Taking a leadership attitude provides an example to others who may be struggling with their chronic illness. You may learn about their disease, and you may not, but people will see that you are taking control of your life. It may provide them with the strength they need to manage all that’s going on. 

When to Follow

You may prefer to follow, or at the very least, “not lead.”

But for some of us, myself included, the idea of following is like nails on a chalkboard. I’ve gotten better through experience to stand aside and let others guide. When it comes to my own life, I prefer to be the driving force

Of course, it should be this way. Still, there are times when I must take a backseat, even in my own life. 

I am about to contradict myself in the same post: we know what’s best, but sometimes we don’t. We may fundamentally understand what we need, but we refuse to follow it. There are times where we must listen to others to care for ourselves. We must follow their advice and suggestions because we aren’t honoring our needs. 

When we step aside and let others lead, it can be humbling. It can be humiliating. It can also give us a break from decision-making. Still, it’s vital to know how to balance leading and following. Don’t let someone take over all the decisions, especially if they are ill-equipped for the role. 

In a nutshell, know when to take control and when to accept help.

Leading and Responsibility

If you are a leader, whether you asked for it or not, you have a responsibility. While I will explore this concept in more depth on Wednesday, I wanted to take a moment to speak to it now.

The moment you reveal your diagnosis in a public manner, you become a leader and “go-to” advocate for your disease. Remember all the times you approached someone who had experience with something you were curious about? Unwittingly, you made that person your “go-to” resource for information. 

It is the same for you now. People will message you with questions, not necessarily to be nosy, but because they might be experiencing symptoms. Each time they search online, the sites point to your disease. You become the de facto expert.

Because of this, you have the following responsibilities. I will examine this list further on Wednesday.

  1. Clarify that you are not an expert and that you can only speak to your experience.
  2. Provide correct and objective information.
  3. Give an honest account of your experience. 
  4. Answer questions, no matter how poorly worded, with compassion. 
    1. To clarify: people may ask questions crudely and offend you with the wording or implications made. Assume it is unintentional (otherwise will stress you out). Re-frame your response to reflect an “askee” who is scared and does not understand how they are coming across.
  5. While you may be a perceived leader, you do not owe answers to anyone. Feel free to decline to answer invasive questions. 

Sometimes we intend to become leaders, and sometimes we stumble into it. Become a leader in your life with your chronic illness.


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The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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