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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Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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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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a-higher-power-to-help-manage-a-chronic-illness

A Higher Power with a Chronic Illness

Approximately 84% of the world’s population is religious in some way. The number may be lower if we compare those who say they are religious, versus those who actively practice. It is safe to assume that the majority of the world has some sort of religious background. For many people, when dealing with a crisis or celebration of some sort, they reach to a higher power. This higher power connects humans to one another, reaffirms the community bond, and provides comfort in times of need. When dealing with a chronic illness, sometimes that higher power provides the strength needed to cope.

For September, the MS Mommy Blog will discuss the advantages, and at times the disadvantages, of having a higher power during a wellness journey. If you have one deity, more than one, or none at all, you’ll find that I will touch upon your situation at least once this month.

A Quick Disclaimer

If I linked you back to this post, it’s because of the following disclaimer.

The MS Mommy Blog takes a strict stance of not promoting one particular religious practice over another, nor will it disparage a specific system of belief. If I take lessons from one philosophy more often than another, it is not an endorsement.

Because this month will have a lot of conversations surrounding religion, I will be as broad and general as possible to be inclusive. If I do use specific examples or terminology associated with one particular religion, it won’t be to promote it over another. This has everything to do with the limitation of the English language and tap into Western cultural shortcuts.

All examples will be done in an honoring way: I will not criticize any particular system of belief. I will, however, address some of the mental traps we fall into as a result of religion, not because of the religion itself. This might be perceived as a criticism, but please do not take it as such.

To be all-encompassing, I will not be using the word “god” in any capacity. Instead, I will use the term “higher power” or “greater cause.” If you have a particular deity, that is your higher power. If you are not religious or an adherent to a traditional belief system, you might have a greater cause that you focus on (see humanism as an example of what I mean).

Looking Beyond Ourselves

Often, at the start of any wellness journey, there’s a call to look beyond ourselves. We might reach out to our higher power to help us start or give us the strength to move forward. Being afraid to try something new, no matter how beneficial it may be, is reason enough to need strength from wherever you can get it. If you are not religious, you may look for other motivations: a child, a partner, or just for yourself.

Whatever the reason, we are looking within to look beyond.

The act of asking a higher power for strength or finding a greater cause allows us to reflect on our life from an objective perspective. We can see ourselves as others see us, and see where we might need an extra boost. Then we can ask for help from our higher power, or see resources related to our greater cause. The act of asking for help is a form of externalizing our desire and can help propel us forward.

I often find that looking beyond myself helps. It’s usually in the form of providing an example to Jai, I see what I want him to do, and therefore, I must model my behavior, so he follows suit. I am looking beyond myself to make changes in my wellness journey, and I find more success because of it.

Finding Motivation Beyond, Maybe

If you grew up in a particular system of belief or are newly converted, you know what works for you. If reaching out to your higher power gets you the answers and comfort you need, then do so. But make sure whatever response you get back is honest and healthy. Sometimes we get a specific response (or lack of response), and it may not be our higher power, but our unconscious getting in the way. That’s the “maybe” in this section’s header.

If you are not receiving comfort or an answer encouraging your personal wellness, seek out a second opinion. Find a leader you trust within your belief community and seek counsel. Understand that they are fallible too, but your higher power should want you to be strong, find comfort, and be healthy. Your leader should help you get a more honest response that isn’t muddled with unconscious and discouraging thoughts.

No Excuses

Here’s where I am going to get controversial: do not use your higher power or greater cause as an excuse not to make positive life changes to manage your illness. Really think about what your higher power or greater cause asks of you. One that wants you to be healthy and managing your illness in the best way possible is reasonable. One that asks you to stay stagnant and be unhealthy may not be your higher power, but your own unconsciousness afraid of change.

If you find that after speaking with your higher power, it gives you an answer to stay unhealthy, you may need to seek outside counsel to get to the source of that answer.

Higher Power & Chronic Illness

So how can a greater cause or higher power help you with your chronic illness? That’s something we’ll be examining for September. You may have one, and you may not. Whatever works for you and keeps you motivated and feeling happy – that’s what matters most.

Your wellness journey is your own, and ultimately, you need to stick with what keeps you moving forward healthily.


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Coping with a Setback

It’s tough to cope with a setback. Setbacks stink, and they, well, set us back. How often have you started with a specific goal in mind only to find that something gets in the way of completing it? It might be a person dragging their feet on a project, a health obstacle, or poor timing, so it doesn’t work out.

Every Sunday, I set a small goal for myself for the week: complete my chores each day promptly so I might spend more time with Jai. I might start off strong, get ahead by two days on Monday only to have something happen Tuesday and Wednesday to get me rushing to finish my chores if they get finished at all. As the week marches on, I get farther and farther behind on my tasks until its Sunday again.

It never seems to fail that each time I get two steps ahead, something sets me four steps behind.

It’s frustrating when this happens. Every time I set a goal for myself, with or without expectation, something gets in the way. The trouble is, it isn’t every time that this happens. It only seems like it due to negative bias. But often it’s enough to leave me to feel discouraged that I am getting nowhere near achieving my personal goals.

The Source of Setbacks

When I recognize that I am slipping down a discouraging path with a setback, I try to reach a space where I can understand what is happening. Some delays are out of my control: the car needs an oil change, and thirty minutes last two hours because the car is due for a maintenance check. In this scenario, I have a choice to make: deal with the issue at hand, and get the car checked out, or skip-it and allow a possible issue fester into an expensive problem.

I choose the setback because I know not dealing with the critical task at hand, maintaining the health of my vehicle, can cause more stress in the future. Yet, time was lost that I planned to devote to something else, and that feels frustrating.

Another source of the setback may be of my own making, typically through self-sabotage. I am aware enough to know that I am the source of it, yet sometimes I continue to engage in the self-destructive setback. This may be dropping the ball on a project, not responding to essential communications, or participating in toxic behavior to avoid dealing with the situation.

When I get a setback that is out of my control, I get more frustrated. When I create my own impediments, I have only myself to blame. I can choose to change my behavior to have a favorable outcome. But when the setback is external, I get more discouraged because I don’t know how to fix it. It’s out of control, which makes me feel out of control.

But I am learning how to better deal with it.

Self-Compassion and Gratitude

When I feel out of control, especially amid a setback, I have to find a healthy way to control the situation. There is only one thing I can control, and that is my reaction to the setback. Through this, I can manage the next couple of steps I take. This is my response, how I deal with my response and deciding what my options are.

Depending on the scenario, a setback might feel like a permanent roadblock, but it does not have to be. I have options for finding a way around it. If I react like I’ve hit a dead-end, I won’t try to find an alternative. If I respond like I can turn around and try a different path, I am more apt to consider my options.

And sometimes a shut door is a shut door. There is wisdom in knowing that there are no other options over assuming there are no alternatives.

To healthily manage my reaction to a setback, I engage in self-compassion and gratitude for the situation. I tell myself, “it’s okay that this might not be your ideal situation, but you will do the best you can with it.” I follow it with gratitude that I am given a chance to learn more about what I can do. Adversity, via setback, is often the best tool to teach us about ourselves.

I don’t seek out setbacks, nor do I martyr myself in the middle of one. Rather, I take the “life gives you lemons,” approach: if I am stuck dealing with it, might as well make the most of it.

Despite what it sounds like, I don’t believe life purposely sets out lessons for us. The lessons are always there, it’s just a matter of, are we listening to them? Setbacks are one of those lessons we can’t avoid, so we should look to them not as keeping us back, but teaching us patience perseverance, and humility.

Each setback isn’t an addition to a lesson, it’s just a chance to deepen or refresh what you’ve previously learned.

Maintaining Focus

There isn’t one ideal way to handle a setback. But I have found one thing, besides self-compassion and gratitude, that helps me get through it: maintaining my focus.

A setback often derails us mentally and emotionally. We might want to complete a particular task this week, and an injury prevents that from happening. Rather than focusing on the injury beyond healing, focus on what can be done in the meantime.

Keep yourself focused while moving forward.

Sometimes it hard to keep that focus if it’s a long-term setback. If that’s the case, consider re-evaluating your goals, if only temporarily. Refocus on another goal that might help you achieve your sidelined goal. Look for alternatives, but keep yourself focused on moving forward rather than staying stuck in one place.

Respecting the Setback and Ourselves

The key to dealing with a setback is respecting the lessons and our ability to listen. Delays aren’t inherently a bad thing, though they do get a bad rap. They are frustrating simply because they put a pause on our expectations, and makes us feel stagnant. Yet, a setback can be a good thing.

I view setbacks as an opportunity to take a break. When I create the hindrance, often it’s because I am doing too much and not listening to my need to slow down. I unconsciously self-sabotage because it’s the only way I will listen to taking a breather.

When the setback is out of my control, it allows me to regroup, figure out what happened, and decide on my next step. Delays will enable us to take the time to reassess what is going on in our lives, especially if we usually don’t give ourselves permission to do so.

It is hard to cope with setbacks, but we can and will each time we experience one. And that’s okay.


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